Medication and liver disease.

[Mary31]

Does anyone have problems with medication taking a long time to work especially pain medication

[sheri44]

before my transplant yes but not sure if it was because the pain was that bad. Now seems to work better even on a very reduced dose. Any medication in particular? Xx

[Mary31 in reply to sheri44]

Mostly pain medication but seems to take 4-5hrs or more to kick in.

[tillycindy]

Yes. as sheri asked what sort of medication are you taking?. I recently O.D by taking another dose of morphine after the first didn,t work (broken shoulder amounst other things) only to have both doses working at the same time. As it was slow release things were a little dodgy for a while!. I have since found that what used to take 1hr to work can now require up to 2ish, but it,s all trial and error. Best wishes anne.

[Mary31 in reply to tillycindy]

Mostly codydramol, nortriptyline, morphine and also antidepressants. They just make me sleep for 15-18hrs a day and no longer feel incontrol. I stopped and reduced as much as possible to give me more awake time.

[Mary31 in reply to Mary31]

Also at one stage slept for three days as the drugs all seemed to kick in at once. I don't find I have much quality of life anymore. If it wasn't for a friend who calls in every day, I would have been in a pickle!!!!

[Mary31 in reply to Mary31]

Had bloods done recently and was just told they had reduced slightly. Sadly I am not eligible for transplant,, or so I was told 6 yrs ago. I was given a prognosis of 4 months then, so have done well. I had managed since then to get my liver down to top of normal level but the last year it has shot up again.

Sadly my GP surgery is over stretched and you have to go through two lots of people to get an appointment and then it it is up to them if you see a dr or not.. not the best system. :-((

[Hidden in reply to Mary31]

I'm alone a lot to I have pbc and cirrhosis I try to make the beat of it don't give up

[tillycindy in reply to Mary31]

That,s quite a mix for your liver to deal with. Do you know the state of it now ie have you had blood tests done recently?.

[sheri44 in reply to tillycindy]

I was wondering that but I'm also on huge doses of pain meds. Reduced now but still quiet high. Sounds like your body is storing it up and releasing it after a few days. You really need a blood test and spk to your doc. I did a lot of this before my transplant. Xx

[Hidden in reply to tillycindy]

blood work in march but I feel good other than bouts of dihirra

[Hidden in reply to tillycindy]

c my dr in march more blood work its been 6 months since I was diagnosed I'll be keeping my fingers crossed so far I feel good except a few things like sleep..and diarrhea but that's it so far

[AyrshireK]

Mary31, are you actually seeing a hepatologist for regular monitoring? If you have cirrhosis you should be having ultrasound scans every 6 months, regular blood tests and be being monitored. You shouldn't just be dependent on a GP for care as the liver requires looking at by a liver specialist ................ our GP doesn't have a clue and recently couldn't even give hubby's tummy a proper examination / palpation for presence of possible fluid - I could have done it myself better than he did.

Katie

[Mary31]

My liver consultant discharged me back to the care of my GP. I get annual bloods unless they are really high, and I hadn't had a US for ages, so had to push that. Not good care here in my area. I asked to see another consultant and the consultant was very rude to me that I should change.

[tillycindy in reply to Mary31]

Contact a patient liaison advocate such as pals (hospital can give you their number) you,re not the first to have difficulties with consultants and ask to change. Have you thought of changing Doctors? You really need someone fighting your corner it,s all too easy to get lost in the system. Please get in contact with some kind of patient support for advice and practical help. anne.

[Mary31 in reply to Mary31]

Thank you I might do that. I just feel that because I am not eligible for transplant and am nearing 70 I am being left to die so to speak. :-((

[AyrshireK in reply to Mary31]

Who made the decision you were ineligible for transplant? Was it this consultant you have issues with or an actual transplant unit?

6 years ago your age would not have been an issue as many folks receive transplants well into their 60's - even approaching 70 isn't an out and out bar as it depends on your overall health and many 70+ folk these days are really fit.

It is normally only another health issue which would make the transplant too risky (heart, lung, stroke issues), extra hepatic cancers or such things as an ongoing addiction that are contraindicatory for transplant & only a transplant unit should be able to assess these things and decide yes or no you are eligible.

Sounds like your care to date has been apalling.

Katie

[Mary31]

It was just a senior registrar on the Gastro liver team. At Salisbury hospital. When I asked to be transferee to a liver specialist at Southampton a few years ago I was told that my consultant had trained him so he wouldn't do anything more than is already being done which was sweet nothing. It may be as I have spinal injuries and so can't mobilise, and bowel problems so can't eat a very healthy diet, but was never told this in so many words. The following year my husband died and so I just accepted I would follow him soon. But now 5.5yrs down the line I am getting really frustrated that my quality of life is pretty naff. I have a good medical power of attorney now as my daughter lives in Australia, and I feel she will fight my corner. Thanks.