Thank god! Forgot to mention I was in clinic on Thursday seeing my god like consultant! I’m now in clinic every 6 weeks now after almost 6 months. From others you’ve communicated with here does that sound average?
My clinics. 1st was one week after discharge. since then it has been monthly. Got another clinic coming up later this month. I'm now four and half months post transplant. I was thinking that maybe after this next clinic it might change to less often because all my tests have been good. I'll let you know if it changes.
Mine were 1 a week for 6 weeks and then 2 weeks up until now? Threes been an issue with my through being slow to trough at 5mm and that why I was seen so often. My blood still doesn’t line it which is s nuisance because I’m still in a high mm I’d Advagraf 6 month on. Apparently it’s not incommong but they obviously like to see hoes it’s behaving.
If it's gone to every 6 weeks now then they must be happy that things are improving. I'm on adoport. Started of on 12mg and now down to 5mg. 3morning and 2 evening.
I just wondered Alf how tbe teams decided what to put you on? I’m not questioning their decisions but just curious? Perhaps it has something to do with the type of liver disease? I
I wonder if it varies between patients or between hospitals. Were you put on ritilin at all? That's a drug that protects the stomach from all the other drugs that are being taken.
I’m on 20mg off Omeprazne for the git. 5mg of Pred every other day for next three weeks then none at all, 100mg of lifetime Lamavudine and 7mg Advagraf. Not see how long I’ll have to be on the Omeprazole though?
Hi Milo sorry Pilo, I think that one of the tablets are once a day., not sure if that's Prograf or Advagraf and I was told that the once a day one was for working people or busy people that might forget if it was to be taken twice a day. So that says it all for me then! lol. Twice a day for me!
No, I was told that by a liver nurse at Queens Med. I expect that they are thinking of long term with the tablets as I am fully retired. I was transplanted at Addenbrookes but I go to Queens med for my clinics. The specialists, surgeon,hematologist, etc all come over from Addenbrookes for a monthly clinic at queens med. They do follow ups post transplant and also see patients that are hoping to be put forward for transplant assessment. So most visits I see most of the transplant team.
That’s really interesting 👌🏼. In relation to another post completely re Lamavudine. I was exposed to Hep B around 30 years
ago so I’m told? Must have been a very mild case as I never knew? Anyway, because I’ve been exposed and am on immune suppressants it can reactivate in my donor liver and I’ll have to take the Lamavudine for life. Crazy how it can reactivate itself?
Certain viruses can lay dormant in the body and can be reactivated at any time and some more so than others. I just had to take my anti-viral for CMV for 3 months because my donor had the virus. Apparently 50%+ of the population have it and in most cases it causes no problems but it can cause problems with a transplantee because of having little or no immunity. It's a bit like chicken pox virus that lays dormant in a nerve in the body and later in life it can re-emerge as shingles but not everyone that has had chicken pox will necessarily get shingles, it's generally when a person is run down or at a low ebb that shingles will rear it's ugly head!
Different drugs suit different people 😁 I have been on all of them and am now on advagraf have been for a year but they are going to have to change if my kidneys don't improve I am classed as having CKD chronic kidney disease because of the advagraf but the others sent me loopy or buggered my bloods up lol
I certainly do! I’ve been wearing Pounland Glasses fit almost a month but due to my eyes failing I wasn’t able to get a correct prescription. I have now revived my CVI and can get three free pairs a year, probably from Boots!
Haha this had made me chuckle this morning. I’ll sit on the fence and say I can’t see any resemblance, even George Clooney sorry!! You obviously have a great accent -I’m well jel!
You’re doing really well with your clinic appointments that’s brilliant going to 6weeks. My husband has been on monthly visits with occasional blips in between due to bloods and we can’t wait to get the time extended. It is a minefield of tweeking different medications against reaction/benefit etc. I’m sure your meds will reduce nicely over the coming months. You’re doing great, all the best x
Thanks you! I think it must have b even either the Pred or the mild Encephalopathy that caused the George Cloiney moments! I know that I shouldn’t make light of this as many have has dreadful experiences with both that I have mentioned. Again, I was very fortunate to only have my Encephalopathy. It’s really crazy re my accent as I have a berry senior managerial job within the NFP sector and when working my accent completely changes! As soon as I step out of a work environment.........! Have a great weekend 😊
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