Tacro levels post tx

[Jonny B]

What are people's levels running at? I'm two days short of my tx anniversary and have been running at 8/9 taking 2.5mg twice a day. Just had them reduced to 2mg twice a day a fortnight ago and blood test on Tuesday was 5.7 which is the lowest since I was just out of hospital. Lets know your levels..

It's also at a time like this that I am really starting to think about my donor and his/her family
Has anyone written to their donor's family and how did you go about it? Thinking in terms of who to ask and what to include and not to include.

Jon

[webster]

Hi. My husband had a transplant 2 years ago, had lots of problems. Went to clinic yesterday and his taco readings are down to 2.5 Docs has increased his meds, and got to go back next week for more blood tests. This is the second time they have been this low this year!

[Jonny B]

Sounds like they are sorting it at least Sally
Hopefully the increase in meds will get the levels back to normal

[Shinto]

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[bigbuzzard]

Hi Jon

Also coming up to a year here. I've been on 2mg 2x per day tacro for several months now. Levels have been pretty static around 10 since May, when I was on 2.5 I think. These are, I think, right at the top end of the target range, however, they're reluctant to reduce them, as I'm only on tacro and pred, rather than the more usual triple combo. I'm keen to reduce the tacro as it was partly blamed for seeing off my first transplant - and for a long time before tx no. 2 I was just on 1mg.

[rheaybou]

I am 8 months in and my Tarco levels have fluctuated between 5-11 in the months post transplant. I have had no problems with my medications being altered as I have alsways been booked in for clinic the following week to check levels again. I would think that the rate you absorb the medication will be based on a number of factors and after the body has been through such a shock it will take time for everything to settle down. Is this 'blip' the first you have had and when do they plan to recheck?

Regarding your donor, I would speak to the transplant coordinators. Getting a kidney from a live donor is difficult, but not being able to thank your donor must sometimes be difficult. Even if you wrote a letter there is a chance the coordinator will never be asked to pass it on by the donors family. Just live a full life and enjoy the second chance, I am sure that is what the donor would have wanted and the family will hope you do.....have a glass of wine/beer on your anniversary

[AmandaClare]

@webster: how are things with your hubby? I remember he had loads of problems after tx. Are things OK at the moment?

[Tibbs]

I'm on 10mg twice a day.

My FK (Tacro) profile looks like this...

https://docs.google.com/spreadsheet/ccc ... WU2c#gid=0

[Jonny B]

The consultant thought that now I'm a year post tx that levels of 8 and 9 were slightly high for me so decided to reduce the tacro to 2mg daily. I'm sure 5.7 is in the normal range and he'd have phoned if it was a problem, was just interested to see what levels others were running at. Just had my lansoprazole reduced from 30mg to 15mg daily this morning by Stockport (more cost cutting) so will need to ask about that as well.

[sanela]

I'm on tacro only, 2mg am & pm, levels steady around 5-7. As I understand it, there a many factors that will determine what your levels should be. One of them is how well your body metabolizes the tacro.

At my 1 year anniversary I did write a short thank you letter/card for the donor's family and gave it to the transplant coordinator. They advise you to keep it simple and fairly anonymous though I was told I can sign my first name or initial.
Whether it was passed on, or if the family accepted it, I don't know. Some families don't want to take a letter, it may be too emotional or painful, or too soon, to be reminded of what happened. I am very conscious of the fact that, while I am here, celebrating the date that something so lifesaving and life changing has happened to me, that family is reflecting on their loved one's passing.
I'm thinking next year, at my 5 year mark, of writing again. I would hope that the family would find comfort in that, 5 years on, just knowing that a letter has been sent even if they don't take it, what tragically happened to their family, what they so selflessly, generously did at that time, is having such a wonderful lasting effect on someone else.

Congrats on your anniversary, may there be many more to come.

[webster]

Hi Amanda Clare. I have not been on here for quite a while. My husband is a lot better than he was. But every month when we go to clinic there is always something they have to adjust. He went on Monday for his bloods checked and by Monday evening they were on the phone. His taco. readings had dropped again to 2.5 and his creatinne had gone up to 250. They have increased his advograf? and he is going again next week for his bloods checked again. He had his flu jab last week end so they don't know if that as knocked his readings.

On a whole he is still well, but he has bad days, tired, dizzy, and he is still a funny colour! Still doesn't work full time. But hey, he is still here to tell the story!

Thank you for asking.

[AmandaClare]

Good to hear about the improvement. I hope he can get on more of an even keel soon.

[Rik]

I'm on advagraf not prograf ...
so only take mine once a day along with all the rest of my tablets ...
2 1/2 mg
it's damned easier than trying to remember to take the second half at some time in the evening ...
which more often than not I forgot!!

[Jonny B]

Yes Rick can be tricky to remember the evening dose. Thankfully I've got a Casio G shock watch so the alarm goes off to remind me.