Monday, 30 September 2013
Terrible night last night. Very little sleep and very uncomfortable. Woke tearful and shattered. Hospital appt this afternoon. Good news, bloods are still coming down, so steroids are doing what they are supposed to (albeit with lots of horrible side effects). However, still not below 100. They have made a tiny reduction in steroids.They think the sore area under right ribs is liver inflamation. Bloods again Friday and hosp again next Monday. If improvement maintained, then they might start the immunosuppressant azanthioprine next week, and then gradually reduce steroids as they increase azanthioprine, which it is hoped will stabilise the condition. It is not without it's own sometimes unpleasant side effects, but is preferable to high dose long term steroids. Whatever I'm on, there will be no escaping regular blood monitoring!! High hopes for sleep tonight
Sunday, 29 September 2013
Best nights sleep in weeks! Could it have been watching strictly, or eating jam sandwiches at 10pm?? Either way slept from 11.30 - 8am solid. Weight still same. Ribs remain uncomfortable all the time, but not enough to stop me eating roast beef and yorkshires tonight. Managed 2 dog walks this morning then donkey care this afternoon. No tears, just anxious about tomorrows results.
Saturday, 28 September 2013
Only managed 3 hours sleep last night. Stayed as busy as I could all day with just an hours rest this afternoon. Very little cramp, but skin awful and tender. Still lots of discomfort under right ribs all day. Mood brighter though and no tears at all. Lots of positive comments from British Liver Trust chat room from others in similar situation. Seems diet is the way to go, lots of veg, bit more carbs less protein sugar and fat. Also suggestions of getting tested for vit/min deficiencies and taking various supplements to boost immune system. Will discuss at clinic Monday. Hunger has returned (am stuffing a jam sandwich as I type) despite all fruit efforts today. Weight same at 9 stone. This thing is taking over my life. I cannot switch off from reading/chatting about it and am sure I'm driving everyone insane with tediousness of it all, but can't seem to stop. Just feel like I have to learn as much as possible to maximise my chances and try to gain some control over the situation. Don't know if this is the right way to go, but the alternative would be to just let the medics do their thing and remain passive........surely that wouldn't be right?
Friday, 27 September 2013
Uncomfortable night due to right ribs/?liver. Skin looking terrible, I guess due to steroids, and still a bit yellow. Up at 7am and quite a steady morning. Not feeling so unwell and managed 2x dog walks, coffee with M's mum then off to the surgery for bloods again. Sticking with healthy fresh fruit salad as much as possible to avoid eating so much rubbish, and at least 1 banana to reduce cramps! Weight remains at 9stone whatever I eat. Have stayed positive with no tears today (after wailing to a friend on the phone last night). Bed for a couple of hours this afternoon, then a lovely hour with the donks in the sunshine. 3 dogs boarding so busy weekend ahead. I know I have to take each day/week at a time, but finding it really hard to not think about the future.............absolute crap not being able to plan anything, and so confusing when one minute you are buzzing and the next you keel over with exhaustion.
Thursday, 26 September 2013
Not a good day. Started getting discomfort below right ribs last night (just like when all this started weeks ago). Still there all day, feel bloated again and having to wear loose clothes. Nauseous this morning and cramps to hands/feet still there. I even think eyes are tinged a bit yellow again. Due for bloods tomorrow, fingers crossed the levels aren't on the up again. Feel very tired. So much for all the extra fruit and veg.....................may have to buy bannoffee pie again
Wednesday, 25 September 2013
Have found the British Liver Trust's website and chat room! Lovely to discover others in similar situations and to be able to get advice/support. Discovered that the cramps are probably to do with the steroids and that others have found relief from eating at least 1 banana a day. Went supermarket shopping this morning to stock up on healthy stuff..........aghhhh...........but three puddings at one sitting has to stop! Now on extra fruit/veg, and trying to make it interesting. Felt a bit unwell whilst shopping, then found M in the fruit and veg ailse......she knew I was too tired to manage very well on my own so came to help me ............what would I do without her?Healthy lunch then sleep for a few hours this afternoon. This routine seems to be helping big time, just have to pace myself and stick to only the jobs I plan each day. Managed the donkey care ok again this afernoon. Beginning to wonder if I might be able to return to work in the future, if only part time.
Tuesday, 24 September 2013
Slept well from midnight last night and felt ok this morning. Managed to do quite a bit (cat feeding, one 1hr dog walk) Back to bed this afternoon for a few hours, and then active from 3-bedtime. Did all donkey care this afternoon and played with our dogs in the garden. Still eating too much.............plan to start eating a more balanced diet (well at least not eating 3 puddings at a time!) Mood brighter, some cramp/discomfort/tiredness but generally a really positive day. Am finally able to get in touch with friends and thank them for support, managing email and phone calls without falling asleep half way through.
Monday, 23 September 2013
Whoohoo.......bloods are still coming down! At their worst the ALT was 1,800 (normal below 100) last week had dropped to just under 700, this week just under 300. This means am in remission. They wouldn't drop the steroid dose this week though just in case. So..........same dose, bloods again on Friday, clinic again next Monday. Ultimate aim is to get me on lowest possible steroid dose and to introduce azanthioprine (imminosuppressant) to stabilise condition. Bad news.......this could take weeks/months depending on each result. can't see me being back at work anytime soon. Felt well today and managed without having to go back to bed. Walked one of our dogs this morning and enjoyed a walk with M on the Hoe before hospital this afternoon, and I drove to Plymouth, the furthest I've managed in weeks!Lovely to get to the sea again. Still eating bizarre amounts of food and not gaining any weight!
Sunday, 22 September 2013
Best night in weeks. Slept from midnight to 7.30 am. However, once up, terrible day. bad tempered, weepy and tired. Think I did too much yesterday, or it's just all catching up with me. Had hoped for a nice relaxing Sunday, but found myself cross with the donkeys (who wouldn't do as I asked) I have never lost it with them, but ended up in a stressful stand off, me with anti itch cream that I needed to apply, them running away. Me begging them to behave and crying, knowing this would not work but somehow unable to change tack. Me in melt down, them looking totally confused as to what was wrong. Eventually all calmed down, cream was applied to insect bites and hoofs cleaned. Remained weepy all day and don't know why. Went to bed at lunchtime, but didn't wake up feeling much better. Off to the hospital for results tomorrow. Plan to have a walk on the Hoe beforehand.
Still eating mountains, weight 9st 1lb
Still eating mountains, weight 9st 1lb
Saturday, 21 September 2013
Well I finished off the bannoffee pie late last night! Didn't help me sleep, awake much of the night with thoughts racing and feelings of cramp again. Fast asleep of course when the alarm went off. Up and busy from 8am, 3 dogs and 2 rabbits boarding with us, and cats to visit/feed. Took one of our dogs walking (blackberrying) on my own this morning and enjoyed it, although at a slower pace than usual. M and I then took my parent's dog home who had been spayed yesterday, so had stayed the night with us. It was lovely as it was the first time I've seen my dad for about 6weeks as I have been too ill to drive/travel. Home by 4pm (no nap today and coped well). Donkeys seen to with M, rabbits collected boarding dogs dropped home, then supper delivered by friends/customers again, so thoroughly spoilt. little sign of jaundice now, so something is working well. Appetite still huge:
7.30 4 biscuits and tea/tablets
9.00 2x toast and coffee
11.00 mars bar and coffee
12.30 Cheese and marmite sandwich and pringles/juice
2.30 2x cornish fairings/kitkat and tea
4.00 juice x2
6.00 pringles
7pm garlic bread, lasagna, salad, lime/raspberry mousse (x2!) coffee and Polish chocolates (had to as the rabbit customers gave them to us today, would have been rude not to!)
weight 9st 3lb!
Feeling much happier although wrecked
7.30 4 biscuits and tea/tablets
9.00 2x toast and coffee
11.00 mars bar and coffee
12.30 Cheese and marmite sandwich and pringles/juice
2.30 2x cornish fairings/kitkat and tea
4.00 juice x2
6.00 pringles
7pm garlic bread, lasagna, salad, lime/raspberry mousse (x2!) coffee and Polish chocolates (had to as the rabbit customers gave them to us today, would have been rude not to!)
weight 9st 3lb!
Feeling much happier although wrecked
Friday, 20 September 2013
Unable to sleep last night for cramp in toes, lower legs hips and hands. Mind racing and unable to switch off. Found myself looking for books on auto immune hepatitis. Most of them are for medics and cost between £110-£600 . Guess they don't want us to understand the condition, seems you have to buy entire text books on hepatology to get a section on the specifics of auto immune hepatitis, or a whole book on other auto immune conditions to get a chapter on the condition.Up at 7am. Weight down to 8st 13lbs, metabolism must be crazy as I have never eaten so much in my life. In fact today I ate the following:
7am 4x biscuits and lemon/ginger tea with tablets
9am 2x toast and coffee
11am 2x LARGE choc covered marshmallows and coffee
12.30 LARGE bowl carrot and coriander soup 2x crusty rolls and an apple turnover
3pm 1x bag hula hoops and squash
6pm 2x LARGE sausages 3x bacon mushrooms tomatoes and fried potatoes squash and bannoffee pie
And as its 7.45 pm........there will be more before bed (in fact, I am defrosting more bannoffee pie in case!)
I have been much more active, but still have repeated cramps in hands, legs and feet.....will have to try a magnet in the bed tonight as my Nan used to recommend.
7am 4x biscuits and lemon/ginger tea with tablets
9am 2x toast and coffee
11am 2x LARGE choc covered marshmallows and coffee
12.30 LARGE bowl carrot and coriander soup 2x crusty rolls and an apple turnover
3pm 1x bag hula hoops and squash
6pm 2x LARGE sausages 3x bacon mushrooms tomatoes and fried potatoes squash and bannoffee pie
And as its 7.45 pm........there will be more before bed (in fact, I am defrosting more bannoffee pie in case!)
I have been much more active, but still have repeated cramps in hands, legs and feet.....will have to try a magnet in the bed tonight as my Nan used to recommend.
Thursday, 19 September 2013
Better nights sleep. Feeling more positive and a bit less tired. managed to do quite a few bits this morning, though had to give in and go back to bed at lunchtime. Lots of strange physical things, toes, hips and fingers getting cramp on and off. Mouth ulcers, flushing, sensitive skin and joint pain/headaches. Appetite still massive but no weight gain at all........!Trying not to think too far ahead and to take it week by week. Bloods re test tomorrow, fingers crossed for more improvement. Nice being up and involved a bit at last.
Wednesday, 18 September 2013
Feeling better
Found I was still awake and buzzing at midnight last night..............settled after buttered crumpets and tea, and slept from 2-6am. Thought it would be a good idea to take prednisolone early at 6am , but then woke again at 7am thinking I was having a heart attack......indigestion . made myself get up and start the day pottering as usual. No headache this morning. Even managed a short walk with some of the dogs, but still not able to drive confidently. back to bed for an hour at lunchtime after supportive phone call from boss. Able to visit my donkeys and not overdo it .Less tearful today and feeling generally more positive. Cannot stop eating, but weight still same. Skin feels funny and face a bit puffy, mouth ulcers and tingly fingers. Managed more overall without feeling quite soooooo tired
Tuesday, 17 September 2013
Reality sets in
Woke feeling dreadful. Is this withdrawal from Duloxetine? I have tingly electric shock sensations in my fingers and my heart is racing at times. I have a headache that won't clear (dare not take paracetamol) and just want to sleep. I make myself get up and potter around seeing to visiting dogs/rabbits. Weather is awful and M will not let me go out in this, so she is still doing all donkey care. I miss them. Decide to try a little food shopping at local shops, but regret this as I feel woozy and panicky/nauseous. Come home and spend the afternoon in bed. After tea, become weepy ++ cannot see how this is going to affect our lives. Will I be able to work again? If so will it just be part time? How do you run a pet care business if you're not allowed out in the rain? Are we able to manage without my income? Am I going to be some poor pathetic poorly person forever only pottering and on and off steroids for the rest of my life? What if the drugs don't stabilise me? What about the SEVERE possible side effect that I googled last night? Not usually this negative. M tells me to stop it........if only I could. Hopefully this is duloxetine withdrawal and positivity will return tomorrow. Speak to my son, he's so lovely and makes me laugh....mother love...best drug ever!
Auto immune hepatitis
Monday 16th September 2013
He got it right. In clinic I am told that the biopsy confirms that I definitely have auto immune hepatitis. My bloods are moving in the right direction, the consultant looks like the cat that got the cream. Bizarrely, M and I are thrilled with the news. At least we now know what is causing this. We have loads of questions, but he stops us saying he will be seeing me weekly and there will be lots of time for questions in the coming weeks. He wants to reduce the Prednisolone by 10 mgs to 30 mgs daily from tomorrow. I am to have repeat bloods on Friday and then see him again next week in clinic. He plans to gradually reduce the dose over the next 3 weeks then introduce an immunosuppressant to stabilise the condition. He touches on side effects, but will not go into details today. We leave feeling very positive and begin to ring friends and family on the way home with the good news. We call in to M's mum to update her. Everyone is pleased. It's only later that I start to realise that this is not necessarily great news, but try to push this from my mind. I expect to sleep well, we are both exhausted, but find once again, I'm awake and snacking before finally falling asleep around 2am
He got it right. In clinic I am told that the biopsy confirms that I definitely have auto immune hepatitis. My bloods are moving in the right direction, the consultant looks like the cat that got the cream. Bizarrely, M and I are thrilled with the news. At least we now know what is causing this. We have loads of questions, but he stops us saying he will be seeing me weekly and there will be lots of time for questions in the coming weeks. He wants to reduce the Prednisolone by 10 mgs to 30 mgs daily from tomorrow. I am to have repeat bloods on Friday and then see him again next week in clinic. He plans to gradually reduce the dose over the next 3 weeks then introduce an immunosuppressant to stabilise the condition. He touches on side effects, but will not go into details today. We leave feeling very positive and begin to ring friends and family on the way home with the good news. We call in to M's mum to update her. Everyone is pleased. It's only later that I start to realise that this is not necessarily great news, but try to push this from my mind. I expect to sleep well, we are both exhausted, but find once again, I'm awake and snacking before finally falling asleep around 2am
dulxetine withdrawal
Friday 13th September 2013
First day without duloxetine. Not bothered about mebeverine, except if IBS flares, but can manage that with diet I think. Appetite now returned and eating well. have gained 2lbs. Urine almost normal and am now able to potter around the house for a few hours at a time. Off to gp surgery for more blood tests and to collect a further 4wk sick note. My son comes with me as I haven't driven for some weeks and he is worried about me. We had a lovely evening last night, enjoyed a meal and a snuggle with tea and cookies whist watching TV. He was so caring and concerned about me. I miss him so much but am so proud of the man he has become.We pop to see M's mum who he hasn't seen for some time, then back for lunch with M, who agrees to give him a head shave with her dog clippers! Feeling weak and tired again, so M takes him to the station whilst I return to bed.
Saturday 14th September 2013
AGHHH.............urine very dark again and eyes still looking yellow. Am beginning to get very anxious about results on Monday.............what if he's wrong and we still don't know the cause? What if the steroids are just calming the inflammation and not the cause? In the evening, a customer brings round a huge meal for us, complete with side dishes, wine and non alcohol wine for my poor liver. Home made banoffee pie for afters, delicious. It was so thoughtful and kind of them. We are usually so independent and find it hard to accept others help, but were truly grateful for this.
Sunday 15th September 2013
Hooray.............urine normal again (my life has become a study in bodily functions, not good for general conversation). The same customer calls to take one of our dogs out for us in the morning. This seems like a huge imposition on her but she is adamant. Unfortunately the said dog decides to roll repeatedly in fox poo whist on the walk requiring a full shampoo and hose down on return...............I'm sure this was not what they had planned for their relaxing Sunday!
Still not sleeping but have a little more energy.
First day without duloxetine. Not bothered about mebeverine, except if IBS flares, but can manage that with diet I think. Appetite now returned and eating well. have gained 2lbs. Urine almost normal and am now able to potter around the house for a few hours at a time. Off to gp surgery for more blood tests and to collect a further 4wk sick note. My son comes with me as I haven't driven for some weeks and he is worried about me. We had a lovely evening last night, enjoyed a meal and a snuggle with tea and cookies whist watching TV. He was so caring and concerned about me. I miss him so much but am so proud of the man he has become.We pop to see M's mum who he hasn't seen for some time, then back for lunch with M, who agrees to give him a head shave with her dog clippers! Feeling weak and tired again, so M takes him to the station whilst I return to bed.
Saturday 14th September 2013
AGHHH.............urine very dark again and eyes still looking yellow. Am beginning to get very anxious about results on Monday.............what if he's wrong and we still don't know the cause? What if the steroids are just calming the inflammation and not the cause? In the evening, a customer brings round a huge meal for us, complete with side dishes, wine and non alcohol wine for my poor liver. Home made banoffee pie for afters, delicious. It was so thoughtful and kind of them. We are usually so independent and find it hard to accept others help, but were truly grateful for this.
Sunday 15th September 2013
Hooray.............urine normal again (my life has become a study in bodily functions, not good for general conversation). The same customer calls to take one of our dogs out for us in the morning. This seems like a huge imposition on her but she is adamant. Unfortunately the said dog decides to roll repeatedly in fox poo whist on the walk requiring a full shampoo and hose down on return...............I'm sure this was not what they had planned for their relaxing Sunday!
Still not sleeping but have a little more energy.
Steroids
Tuesday 10th September 2013
I'm given my first dose of prednisolone 40mg (I've only ever known anyone be on 30mgs before) I'm also prescribed calcium d3 to combat the risk of osteoporosis that comes with taking steroids. I'm told to have bloods retaken at my surgery on 13th then to attend hepatology clinic next Monday 16th for biopsy results. My sister comes to collect me (M is working) and we go for coffee whilst waiting for the script to be done. I hope the consultant's gamble is right and his suspicion of auto immune hepatitis is correct, but will have to wait till next week to find out. Home soon after lunch, back where I belong. Still obviously very yellow and lethargic ++. Strict instructions to rest when I get home, and already have a slight appetite. Weight now down to 9stone.Spend the evening hearing all about the graduation I missed and looking at photos taken by Mum, M and my sister. Wish I had been there. Unable to sleep, keep singing songs in my head but my body is knackered.
Wednesday 11th September
My sister has to leave this morning. It has been great knowing she was here to support everyone, run errands, cook tea and just love me. Will miss her. Phone and texts from everyone do not stop, I'm genuinely surprised how much everyone cares. Even my bosses have been on the phone to M to tell me not to worry about my job and to just concentrate on getting well................if only concentration was all that were needed. Bed again after lunch, feel so bloody useless. Not able to settle at night, mind racing though body wrecked.
Thursday 12th September
Small but noticeable reduction in level of jaundice. Steroids are definitely calming things down (except my brain!) Urine less dark (has been like ale for weeks) eyes slightly less yellow and skin a little improved. At teatime I receive a call from my lovely gp. She tells me to stop my duloxetine immediately and also my Mebeverine. I have been on these drugs for at least 6 years to manage anxiety and depression. She says there are clear contradictions with liver problems and I should stop them. I had already asked the consultant about the duloxetine before leaving hospital and he had reassured me it was ok. However, I know and trust my gp, I'm off sick anyway, how bad can sudden withdrawal be??
I'm given my first dose of prednisolone 40mg (I've only ever known anyone be on 30mgs before) I'm also prescribed calcium d3 to combat the risk of osteoporosis that comes with taking steroids. I'm told to have bloods retaken at my surgery on 13th then to attend hepatology clinic next Monday 16th for biopsy results. My sister comes to collect me (M is working) and we go for coffee whilst waiting for the script to be done. I hope the consultant's gamble is right and his suspicion of auto immune hepatitis is correct, but will have to wait till next week to find out. Home soon after lunch, back where I belong. Still obviously very yellow and lethargic ++. Strict instructions to rest when I get home, and already have a slight appetite. Weight now down to 9stone.Spend the evening hearing all about the graduation I missed and looking at photos taken by Mum, M and my sister. Wish I had been there. Unable to sleep, keep singing songs in my head but my body is knackered.
Wednesday 11th September
My sister has to leave this morning. It has been great knowing she was here to support everyone, run errands, cook tea and just love me. Will miss her. Phone and texts from everyone do not stop, I'm genuinely surprised how much everyone cares. Even my bosses have been on the phone to M to tell me not to worry about my job and to just concentrate on getting well................if only concentration was all that were needed. Bed again after lunch, feel so bloody useless. Not able to settle at night, mind racing though body wrecked.
Thursday 12th September
Small but noticeable reduction in level of jaundice. Steroids are definitely calming things down (except my brain!) Urine less dark (has been like ale for weeks) eyes slightly less yellow and skin a little improved. At teatime I receive a call from my lovely gp. She tells me to stop my duloxetine immediately and also my Mebeverine. I have been on these drugs for at least 6 years to manage anxiety and depression. She says there are clear contradictions with liver problems and I should stop them. I had already asked the consultant about the duloxetine before leaving hospital and he had reassured me it was ok. However, I know and trust my gp, I'm off sick anyway, how bad can sudden withdrawal be??
Monday, 16 September 2013
Liver Biopsy
Monday 9th September 2013
My sister takes me to hosp and stays whilst I'm admitted to the planned investigation unit. M crys. I still don't realise how unwell I am, but just feel heartbroken to be missing my son's big day. My procedure will be at 3pm, the exact time that his ceremony commences. At 2.45, he texts me to say he's thinking of me and he loves me. The biopsy is painful but over quite quickly, and the staff are just brilliant with their reassurance. I have local anaesthetic but no sedation. I'm hungry from being starved again. I text my son to say I'm sure his gown is better than the one I'm wearing with my bum hanging out. The bloods that they took in the morning are worse again (how much worse can they get?). The consultant tells me he is 80-90% sure that I have auto immune hepatitis and wants to start me on steroids straight after the biopsy. I admire his confidence, but am beginning to feel that we will never know whats causing this. I ask if he is right, what the prognosis is. "It will be a life long condition that will have to be managed". I eat a sandwich whilst on 6 hours bed rest following the procedure. I'm not even allowed to go to the bathroom. I sleep fitfully and look forward to awaiting more results.
My sister takes me to hosp and stays whilst I'm admitted to the planned investigation unit. M crys. I still don't realise how unwell I am, but just feel heartbroken to be missing my son's big day. My procedure will be at 3pm, the exact time that his ceremony commences. At 2.45, he texts me to say he's thinking of me and he loves me. The biopsy is painful but over quite quickly, and the staff are just brilliant with their reassurance. I have local anaesthetic but no sedation. I'm hungry from being starved again. I text my son to say I'm sure his gown is better than the one I'm wearing with my bum hanging out. The bloods that they took in the morning are worse again (how much worse can they get?). The consultant tells me he is 80-90% sure that I have auto immune hepatitis and wants to start me on steroids straight after the biopsy. I admire his confidence, but am beginning to feel that we will never know whats causing this. I ask if he is right, what the prognosis is. "It will be a life long condition that will have to be managed". I eat a sandwich whilst on 6 hours bed rest following the procedure. I'm not even allowed to go to the bathroom. I sleep fitfully and look forward to awaiting more results.
Viral Hepatitis?
Saturday 31st August 2013
I am unable to get out of bed other than to the bathroom. I am YELLOW in a big way. I am exhausted and barely eating. I spend the weekend in a daze wondering what will happen next. We run a pet care business from home and lots of customers are genuinly worried/concerned. Phones and text come often, but my partner has to deal with all this. All I can do is lay in bed listening to her doing everything. She has doubled her workload with me out the picture. She is having to do all donkey care on top of everything else. I miss my donkeys, and she agrees to drive me down the field to visit them on strict instuctions to stay in the car. I sneak a few kissess and cuddles with them for comfort. Will I have to give them up?? I can't bear the thought, but we won't be able to sustain this for long.
Monday 2nd September 2013
I am driven to the outpatients dept at derriford and dropped at the door as I cannot walk more than a few paces. I am not in pain, but constantly uncomfotable, and needing to wear loose clothing etc. I check myself in and wait for M. We are seen quite promptly. The news is not what we want to hear. We want more than anything to know WHAT is causing this. It's not viral hepatitis. So what is it. A liver biopsy is now booked for the following Monday . This will mean I miss my son's graduation, but they will not budge. I am now so unwell and the jaundice is causing potentially irreverible damage/scarring to my liver. More bloods show further deterioration. I am like a pin cushion and have had enough. I can't think/speak properly, M has to do most of the talking and keep clarifying things to me during the consultation. I know how worried my son is but I have nothing to tell him and no way of reassuring him as I just don't know myself.
3rd-8th Septmber
My sister arrives on a planned holiday. She usually looks after the animals whist we have a break, this time she has to look after us. I spend the week much as before, sleeping and trying to eat. On Sunday 8th I vomit for the first time. I'm the only one who does not recognise the significace of this (i.e further deterioration) and I continue to insist that my partner, sister and mother attend the graduation, whilst I go in to hosp for the liver biopsy tomorrow. A near argument ensues, but everyone does as I ask. I can see M's heart breaking but she loves me enough to do what I want and be there in my absence. My son seems to understand and just wants me to be well.
I am unable to get out of bed other than to the bathroom. I am YELLOW in a big way. I am exhausted and barely eating. I spend the weekend in a daze wondering what will happen next. We run a pet care business from home and lots of customers are genuinly worried/concerned. Phones and text come often, but my partner has to deal with all this. All I can do is lay in bed listening to her doing everything. She has doubled her workload with me out the picture. She is having to do all donkey care on top of everything else. I miss my donkeys, and she agrees to drive me down the field to visit them on strict instuctions to stay in the car. I sneak a few kissess and cuddles with them for comfort. Will I have to give them up?? I can't bear the thought, but we won't be able to sustain this for long.
Monday 2nd September 2013
I am driven to the outpatients dept at derriford and dropped at the door as I cannot walk more than a few paces. I am not in pain, but constantly uncomfotable, and needing to wear loose clothing etc. I check myself in and wait for M. We are seen quite promptly. The news is not what we want to hear. We want more than anything to know WHAT is causing this. It's not viral hepatitis. So what is it. A liver biopsy is now booked for the following Monday . This will mean I miss my son's graduation, but they will not budge. I am now so unwell and the jaundice is causing potentially irreverible damage/scarring to my liver. More bloods show further deterioration. I am like a pin cushion and have had enough. I can't think/speak properly, M has to do most of the talking and keep clarifying things to me during the consultation. I know how worried my son is but I have nothing to tell him and no way of reassuring him as I just don't know myself.
3rd-8th Septmber
My sister arrives on a planned holiday. She usually looks after the animals whist we have a break, this time she has to look after us. I spend the week much as before, sleeping and trying to eat. On Sunday 8th I vomit for the first time. I'm the only one who does not recognise the significace of this (i.e further deterioration) and I continue to insist that my partner, sister and mother attend the graduation, whilst I go in to hosp for the liver biopsy tomorrow. A near argument ensues, but everyone does as I ask. I can see M's heart breaking but she loves me enough to do what I want and be there in my absence. My son seems to understand and just wants me to be well.
Not gallstones afterall
27th August 2013 cont
Having waited for 2 days for the ellusive scan, I had needed to be nil by mouth. In bed on the assessment unit, they were monitoring me and realised that my blood glucose had dropped (what a surprise) so I now had to have another drip of 1000ml glucose following all the saline! Very little sleep, very busy area of the hospital, a kind of chaotic all night sorting ground. Nil by mouth again from midnight in preparation for the scan tomorrow,
Weds 28th August 2013
Finally scanned and no gallstones found. Visited by different consultant and moved to stonehouse ward, cholorectal speciality.
Thursday 29th August 2013
More bloods, they now think I have viral hepatitis, but I am not in a high risk group, have not been abroad, don't do drugs/drink/tattoos, haven't done anything exciting or dangerous! Very jaundice, blood levels getting worse, so presumably liver getting more damaged (will this be reversible?). Am now tearful, as we are no nearer forward in knowing what is causing this. Started one of the best jobs in my life only 6 months ago, have never had a sickness problem, generally I'm like the "Eveready bunny" that just keeps going. I fear this is very serious, and am beginning to pick up the anxiety of those friends and family around me as I just get weaker and more pathetic by the day. My only son graduates from University on the 9th September and I can't see I will be able to go. Tears envelope me.
Friday 30th August 2013
Consultant says I can go home for the weekend and be seen in clinic on Monday. Signed off a further 2 weeks. I'm afraid I will lose my job. I am younger than my partner, and had envisaged being the breadwinner so she could wind down to retirement next year. We have plans. It's all going wrong. I am collected by her and taken home to be nursed as only she can nurse. I know everyone is very worried. I am prepared for the worst and expect bad news.
Having waited for 2 days for the ellusive scan, I had needed to be nil by mouth. In bed on the assessment unit, they were monitoring me and realised that my blood glucose had dropped (what a surprise) so I now had to have another drip of 1000ml glucose following all the saline! Very little sleep, very busy area of the hospital, a kind of chaotic all night sorting ground. Nil by mouth again from midnight in preparation for the scan tomorrow,
Weds 28th August 2013
Finally scanned and no gallstones found. Visited by different consultant and moved to stonehouse ward, cholorectal speciality.
Thursday 29th August 2013
More bloods, they now think I have viral hepatitis, but I am not in a high risk group, have not been abroad, don't do drugs/drink/tattoos, haven't done anything exciting or dangerous! Very jaundice, blood levels getting worse, so presumably liver getting more damaged (will this be reversible?). Am now tearful, as we are no nearer forward in knowing what is causing this. Started one of the best jobs in my life only 6 months ago, have never had a sickness problem, generally I'm like the "Eveready bunny" that just keeps going. I fear this is very serious, and am beginning to pick up the anxiety of those friends and family around me as I just get weaker and more pathetic by the day. My only son graduates from University on the 9th September and I can't see I will be able to go. Tears envelope me.
Friday 30th August 2013
Consultant says I can go home for the weekend and be seen in clinic on Monday. Signed off a further 2 weeks. I'm afraid I will lose my job. I am younger than my partner, and had envisaged being the breadwinner so she could wind down to retirement next year. We have plans. It's all going wrong. I am collected by her and taken home to be nursed as only she can nurse. I know everyone is very worried. I am prepared for the worst and expect bad news.
gallstones?
9th August 2013
I came home from work as usual and didn't want my tea!! Very unusual. Went down the fields to see my donkeys and found I couldn't push a wheelbarrow without pain in my stomach area. Felt like I had pulled every muscle in my middle but couldn't work out how. my day job involves driving/computing, visiting people..........just didn't make any sense.
10th-11th August 2013
Spent the whole weekend moaning and whining that I felt unwell. Off my food, full after just a few bites. Found I could only manage soft food, so pigged out on Berrie pavlova x 2 for Sunday lunch
12th August 2013
Really important meeting to attend at work that I had spent almost 6 months securing with a practise manager. Felt dreadful, weak, and very uncomfortable but was determined to go to work. Took stomach settlers, went down the field to donks then showered and planned to go in. However, realised that I could hardly put one foot in front of the other. Overwhelming exhaustion, just could not go. Called the gp and arranged a call back from her to discuss. Duty gp rang and said she thought she ought to see me. Seen in the afternoon and provisional diagnosis of gallstones given! Signed off for a week, given metranidazole and amoxycillin, blood tests booked and referred for scan within 3 weeks..........result, how bad could this be??
15th August 2013
Ok it's a nightmare. Can't eat or be around food, nauseous, retching, exausted and losing weight. Called duty gp given prochlorperazine for nausea caused by anti bio tics.
19th August 2013
Still utterly exhausted and losing weight fast. Called duty gp. Signed off for 2 weeks rest, drink plenty of fluids, "if I had blood results like your I'd feel exhausted too"
Monday 26th August
Now showing signs of jaundice. Eyes and skin yellow. have lost 8lbs and cannot eat properly
Tuesday 27th August
Hooray.............my own gp back from leave. Arranged to see her. Took one look at me and said I needed admitting and we needed the ultrasound scan now. Sent into Derriford Hosp surgical assessment unit. Naively thought this meant a bed was waiting............oh no...........waited in day room from 3pm until finally getting a bed at 10.20pm. Was seen and bloods taken again, ran out of time for the "urgent" scan so was put to bed on a 1000ml drip x 2 of saline. Night nurse thoughtfully gave me anti clotting injection.............only to discover at midnight when the doctor tried to put a line in my hand the vein exploded causing huge bruising...........guess the heparin wasn't necessary.
I came home from work as usual and didn't want my tea!! Very unusual. Went down the fields to see my donkeys and found I couldn't push a wheelbarrow without pain in my stomach area. Felt like I had pulled every muscle in my middle but couldn't work out how. my day job involves driving/computing, visiting people..........just didn't make any sense.
10th-11th August 2013
Spent the whole weekend moaning and whining that I felt unwell. Off my food, full after just a few bites. Found I could only manage soft food, so pigged out on Berrie pavlova x 2 for Sunday lunch
12th August 2013
Really important meeting to attend at work that I had spent almost 6 months securing with a practise manager. Felt dreadful, weak, and very uncomfortable but was determined to go to work. Took stomach settlers, went down the field to donks then showered and planned to go in. However, realised that I could hardly put one foot in front of the other. Overwhelming exhaustion, just could not go. Called the gp and arranged a call back from her to discuss. Duty gp rang and said she thought she ought to see me. Seen in the afternoon and provisional diagnosis of gallstones given! Signed off for a week, given metranidazole and amoxycillin, blood tests booked and referred for scan within 3 weeks..........result, how bad could this be??
15th August 2013
Ok it's a nightmare. Can't eat or be around food, nauseous, retching, exausted and losing weight. Called duty gp given prochlorperazine for nausea caused by anti bio tics.
19th August 2013
Still utterly exhausted and losing weight fast. Called duty gp. Signed off for 2 weeks rest, drink plenty of fluids, "if I had blood results like your I'd feel exhausted too"
Monday 26th August
Now showing signs of jaundice. Eyes and skin yellow. have lost 8lbs and cannot eat properly
Tuesday 27th August
Hooray.............my own gp back from leave. Arranged to see her. Took one look at me and said I needed admitting and we needed the ultrasound scan now. Sent into Derriford Hosp surgical assessment unit. Naively thought this meant a bed was waiting............oh no...........waited in day room from 3pm until finally getting a bed at 10.20pm. Was seen and bloods taken again, ran out of time for the "urgent" scan so was put to bed on a 1000ml drip x 2 of saline. Night nurse thoughtfully gave me anti clotting injection.............only to discover at midnight when the doctor tried to put a line in my hand the vein exploded causing huge bruising...........guess the heparin wasn't necessary.
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