Looking for more support

[Happyshazz]

Hi although most days I manage with my illness but there are some days when I could do with some extra help. I have a wonderful committed family but they all have their own lives to live.i have always looked after them so its hard fore to ask or burden them with my health issues, and for them ,to become my carer's, my family time is precious,

I try to be as independent as Possible but i do find it a struggle

I feel there is a huge gap from the initial diagnosis... to the the Genral care and information. Here in Southampton I have 6 monthly visits to my consultant and three monthly blood tests: I have no support from hep nurses or healthcare reps, my GP doesn't seem to have much knowledge of my disease.... Disappointed.com

[bam1993]

Hi Happyshazz, do you mind if I ask exactly what you have wrong with your liver? I am still waiting for the results of my biospy, so am really not sure what is going on with mine, but even so I do sympathize with you about the lack of support, I have been waiting ages for my result, and still have to wait until the 6th Nov-even though I have nagged both my GP and Hosp about it!!! I had it done on the 17th Sept, and have been off work since July and am not sure that I will be able to return, so I get really down (I also have Lupus-so am not sure how much of how I feel is down to the liver or the Lupus!!!

I have had a lot of help and advise from Sarah from this site-she has really helped me understand the blood test results-(which the Drs never seem to have time to explain) she has also given me a lot of encouragement!! I am sure she will be in touch with you soon. Also just to say welcome and you are not alone. Good luck Julie x

[Happyshazz in reply to bam1993]

Hi Julie thanks for your post I started loosing weight in. 2009 and feeling very tired all the time, I had bloods taken, my GP phoned me and toldl me to go and buy some iron tablets and to take 3 a day! she said I was really anaemic.,, I did this straight away I took them for a week then had repeat bloods, they were pleased with the results and told me to carry on with the iron ... I started to feel a lot better, but still had the weight loss, in the nov 2009 I contracted the dreaded swine flue was rushed to A&E gasping for air! They confined the swabs taken was the swine flue virus. I was in hospital feeling really poorly and not allowed visitors because of risk of infection.

As my breathing became easier and I started to feel a bit better, I started to turn yellow and fill with fluid from the chest down it looked like I was 9 months pregnant! I had loads of tests done they told me I had a problem with my liver and that they were not sure what was causing it.... They thought the tami flu meds prescribed may of irritated the liver, they asked about my drinking alcohol .... I was in hospital for 6 weeks! I was sent home with ...no treatment plan just told I was a mystery!!

When they FINALY diagnosed me 6 months later I was told that ...unfortunately as my autoimmune hepatitis had not been detected ... It had attacked my liver and caused Cirrhosis

I was put on ridiculously high doses of prednisolone steroids and later they introduced azathriopine. Which I've recently discovered is a chemo tablet!

my face and body ballooned

I had facial hair! I wanted to crawl up and hide away

My poor family suffered with my anxiousness my depression and not wanting to be on the planet!!

My disease is under control 'I think!! But not feeling great these days will be seeing my consultant this thurs

I have my 6 monthly list ready for him/ her ..., never no who I'm going to see!

I am disappointed in the lack of care in such a huge well respected and highly spoken for hospital

I feel my GP hasn't a clue about my illness just would like to know more about this rotten disease xxx

[Abby14 in reply to Happyshazz]

[Happyshazz in reply to bam1993]

Hi Julie I have auto immune hepatitis due to the time I went without being properly diagnosed it has led to liver cirohsis x

[Abby14 in reply to bam1993]

Sarah is Lovely I have talked to her

[L4LSarah]

Hello Happyshazz!

I'm so pleased that you've found us on L4L!

Thanks to Julie for replying, and also for the feedback - most kind!

So......we're here to help you Happyshazz, and definitely don't want you to feel 'alone'!

Perhaps you could let us know what your liver condition is?

Which consultant are you under at Southampton?

I liaise with some of the consultants, and also with the nurses in the liver unit.

I would love to be able to offer you some help and advice, so please don't hesitate to come back to me. You're more than welcome to call me on the Helpline: 08000 74 34 94 or email me at: [e-mail]

In the meantime, here's sending you lots of positive vibes, and best wishes from everyone on here, and also my colleagues at L4L.

Kind regards,

Sarah

Helpline Manager

Liver4Life.org.uk

[Abby14 in reply to L4LSarah]

Thanks Sarah

[Happyshazz]

Hi Sarah thanks for your post. I will contact you via email many thanks xx

[L4LSarah]

Thanks Happyshazz....I'll look forward to hearing from you.

Hope you have a good day.

Best wishes,

Sarah

[Bolly]

Happyshazz. Hopefully Sarah has put you in touch with some support groups or given you other helpful advice. There are medical guidelines for the treatment and monitoring of AIH, and your 6 month doctor visits and 3 month blood tests fit these guidelines. Between doctor visits its up to us to support each other, either online (there is an online Autoimmune forum and an AIH facebook group gfacebook.com/groups/AIHorgUK/ so get signed up to them and you will get lots of 'virtual' support) Some hospitals have patient support groups where you can meet other patients. Ask at your clinic. In between clinic visits, your GP can help with other general medical problems. Or contact the BRitish Liver Trust for general information and advice. If it's practical help with daily tasks you are looking for I guess you may have to pay for domestic help from an agency. There is no special financial help,for patients with AIH unless you are sick enough for benefits.

[mrsvod]

i have aih to and live in southampton i feel the same as you i just get told to take my pills and have blood tests done iv only been diagonised a couple of months i asked my gp to help with the weight gain he just laughed and said youl lose it when you stop the steriods not helpful at all

[AyrshireK in reply to mrsvod]

Not at all helpful when your GP laughed at your question, but sadly his answer is probably quite accurate. Weight gain whilst taking pred is very common and generally it does go away once you reduce and hopefully come off it. It is a horrid drug and has many unpleasant side effects but it is generally the first one prescribed to try and reduce ongoing inflammation in the liver.

Did you come aboard the Facebook page or forum which I previously mentioned to you because you'll definitely find lots of virtual support from folks going through the exact same feelings, symptoms and such like as yourself and increasingly members from the facebook page are meeting in person to share their stories and support.

Katie xx

[mrsvod in reply to AyrshireK]

Yes I did ty I'm on budesonide but Iv already got moon face as they call it sorry having a down day I'm normally a positive person

[Abby14]

Hi Shazz, I have the same amout of appoitments as you so that is I think fairly standard! I also have Mri once a year & An endospy every 2 to 3 years! Thought that might be more as it looks like I have early chrross Though endospey was normal & fibroscan was"nt to bad I do have ongoing amemia & can"t torlrate oral iron so have infustions when needed! You need to do your own resecrch! I did! Bad really but it seems Drs do not talk to you much! My Gp is so good he will find out about things he"s doesn"t know for me He is honest but says I will do my best to find out for you The NHS sites are Quite good! Be careful not to scare yourself! I have done that! I am going back to Kings in London! Good luck with it all