thanks everyone

[jules45]

Thanks to all of you that replied to my post regarding 'a night in hospital' that I sent on Saturday after self discharging from hospital having had 3 litres of urine drained. Its taken me up until now to read all of your kind messages having been resting at home. The good news is I saw my GP on Monday and have had an urgent referral to a urologist. I live in Mid Wales and I have to agree with some of you that services here are very tricky. So far so good since discharge. Caught up with some sleep. I used to take my own meds in with me but have stopped doing it as the hospitals dont administer them and you dont get them back to bring home so you are stuck until you can get a whole new prescription for everything. I was suprised to have this bladder/urine issue as Im on 40mg Furosimide and 50mg Sprironolactane. I couldnt believe after they drained me I weighed 4kg less on the scales. I had been carrying it around with me for months. I was suffering from absesses in the lymphatic system in my groin area which have gone away since drainage. Up until then I was on antibiotics for what the doctor said were boils. At least I'm on the right path now. Have a doppler scan on the liver tomorrow which has been booked for ages so another long journey to yet another hospital miles away. The hospital I went to for my crisis is not my usual hospital so thats probably why I didnt get the treatment I should have had as they dont hold my notes. The one Im going to tomorrow is where my Hepatologist is based and all my records on my liver are kept. Once again, thanks to you all and it was so nice to log on today for the first time since weekend to see such messages of support.

Julie x

[susieanna]

Your welcome; good luck for tomorrow x

[jules45 in reply to susieanna]

Thank you, and hope you are okay

julie x

[Bolly]

Good luck with your referral. In retrospect, if you had stayed in the hospital you just might have seen a urologist then and there .... but then hindsight is a wonderful thing!

[jules45 in reply to Bolly]

Hi Bolly, thanks for message. Living in Mid Wales is always hindsight! I have to laugh or I would cry. At least I went to my main hospital today for my liver scan where they hold all my notes so I didnt have to go over everything. They compared todays scan to my last one just by looking on the computer. Told them about Friday nights nightmare as they wondered why I hadnt been taken there but I told them the ambulance crew were told not to take anyone there that night as they were backed up to the hilt. Patients on trolleys in the corridor etc.

julie x

[pear-shaped]

Good luck Julie. Xxx

Pear

[jules45 in reply to pear-shaped]

Hi Pear, Ive been wondering about you for some time as to how things are with you and your husband. The scan I had today showed my spleen had got bigger, nodules on the liver and some fluid but thats all I could overhear the two consultant scan men muttering about as I was getting dressed. The report will be sent to hepatologist by computer so I will await the news about whats next. So pleased to hear from you its made my day

julie x

[pear-shaped]

Dear Julie,

My husband's spleen was enlarged - local hospital wanted to remove it but luckily they didn't as the liver centre said that it was not necessary. I hope that you get your report soon - you may want to contact the secretary to speed things up a little?

Been home now around 2 weeks. Very weak and not very mobile... But rather this than where we were... There is this constant - what if? Hanging over us - but we are trying to focus on the positives. He should have a scan over next few weeks which will really decide how he is doing internally....

Keep us updated Hun,

Pear

[jules45 in reply to pear-shaped]

Hi Pear, I should hear something quite quickly a my new hepatologist is very much on the ball. I wonder about my spleen - but if they won't remove my gall bladder which is full of stones due to anesthectic risk then they certainly wont remove my spleen. I understand your 'what if' situation as I feel like that a lot. You wonder what each day will bring, how hubby will be tomorrow and the day after etc but its best to take each day at a time as you have been doing. I hope his scan goes ok. Will keep you posted as to what happens my end. Your positiveness rubs off on me as if you can cope with what you've been through with your husband, then so can I. I can still get out and about which is a godsend, short walks and manage my home without help. I do have a support worker much younger than me who keeps me young at heart. Shes a lovely girl who has stuck by me for 3 years through thick and then. Takes me shopping and to hospital appointments when she can. She took me for scan yesterday and we managed to have a nice day. Living alone can be a struggle without family but I cope well. Lots of love

julie

[pear-shaped]

Dear Julie,

It seems odd to say - but even having such a big family - I have faced much of this on my own - I am quite lucky to have some wonderful colleagues at work, hospital docs/nurses/surgeons and endless support staff and secretaries... who have been fantastic in the support they have given me...

The support that kept me sane and on the ball came from this site - I feel as if I have this huge net below me and stops me from falling into a deep dark hole... I can ask anyone here anything and they explain/guide me to the right decision... I think there were about 100 messages during the 2nd transplant - it was as if every single person was there - the strength I was given stopped me from becoming hysterical and deluded - I was able to remain remarkably calm (as can be) and question the steps taken following the discovery of the blood clot...

I have always shared in order to try and give some support to other people on here - but often become the one needing it!

Your support worker sounds amazing...

We are all here for you Julie

Pear

[jules45 in reply to pear-shaped]

Hi Pear, I agree with you that since joining this site I too have gained much more than words can say. Kindness, advice and knowing that there are others to share difficult times with. Many of us are at different stages of illness but always find time to say hi or how are you etc. I must admit Im not very good at giving medical replies about blood results and things but I know when I log into my computer I can come on here and just send a post about all sorts, I agree that it doesnt matter how big a family you have or havent got it is support from sometimes strangers that can be a great strength. My auntie is the only one that cares about me but her problems are always bigger than mine. If she has a sore throat she is in bed for a week and cant grasp the severity of my illness nor doesnt wish to. Her problems are always bigger than anyone elses even though she has no financial or health worries and she doesnt do emotion, I get on her nerves.

love julie

[pear-shaped]

Bless you hun.. Not easy when you have so much to deal with... My mother in law lives with us - has been for over 17 years - she has a personality disorder (B group) which is a mixture of narcisstic and histrionic disorder. The difficulty is that she will never openly admit it in front of the GP (was diagnosed by a private consultation with a Psychiatrist) and therefore they cannot give us any support. I have had to learn to deal with her behaviour and somehow 'train' my kids as well. She isn't very supportive and tries to stir up trouble at any given opportunity.

Liver disease is so complex - family this end tend to ignore/pretend its not there - rather than try to support.

You have us all here - I'm also not great with giving medical advice - but I am sending you lots of cyber hugs...

Pear

[jules45 in reply to pear-shaped]

Hi pear, feel like posting ' liver disease and insomnia' . I have common ground with you (ie the in law) - my nanna who brought me up as my mother wasnt fit was in denial about her mental health issues and she had favourites. My auntie was one of them, then me (so I thought). Nannas side of the family and my fathers side of the family had many alcoholics who died. Nannas mother being one of them. Nanna used to go weeks without speaking, took to her bed leaving grandad to take care of me. It turned out that nanna was a secret drinker and hooked on valium since the 1950's. I think Nanna had much guilt that the alcoholism passed to me as does my Auntie. My father has no time for me as I had liver failure the day his brother died on St Patricks day 2010 and somehow blames me for his death. My father an irish lapsed catholic. Nanna died after a chest infection and dementia in January but before she went she started spilling the beans to me about all sorts and I started to resent her. She never came to see me in hospital, neither did my auntie and I agree with you about liver disease and family ignoring and pretending its not there. My auntie always changes the subject because deep down she knows I was a victim of my childhood and she could have stepped in to help. She will spend money on me buying me gifts that I dont want. If Im ill she will buy me Chanel perfume but cant somehow get to see me in hospital. She phones me weekly at a time to suit her and woe betide if I phone her outside the designated time. I will stress her out. So, cyber hugs are nice from you, and the same back. Should be in bed now but just cant be sleepy, probably because Im worried about the findings of the scan and waiting for that envelope to arrive with the Hepatologist appointment and the news he's going to officially deliver (what I overheard in the scan room). Gosh, Ive talked a lot to you this evening. Probably because nightime is the worst.

New day dawning, seeing GP, and then weekend. Does your husband sometimes be wide awake at night and not want to go to sleep. I just wonder as on paper I should have been in bed and asleep hours ago.

Much affection

julie x