The Team Tibbs Results are in...

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SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: The Team Tibbs Results are in...

Post by SKM23435 »

Talking about tacrolimus doses and seeing the photos of pill boxes reminded me of a question I haven't been able to get an answer to.

I take Adoport. On the patient information it says to take out of the Packaging just before taking. (I guess this is because of a worry about water absorption from the atmosphere). I contacted the medical information line at Sandoz and asked if this made a difference and got a very terse "do as we say or we can't take responsibility" reply. It rather suits me to put all my pills in my pill box once a week. Trouble is with all the rain recently carrying the Adoport in it in my coat pocket in the box probably did expose it to moisture, so I'm now carrying it separately and am concerned re the have I taken it or not question.

Anyone else come across this as a problem? Anyone asked in clinic? (I did ask and got the answer that he didn't know).

Tibbs - enjoy Mexico.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: The Team Tibbs Results are in...

Post by AmandaClare »

I don't put my ciclosporin capsules in the pill box for that reason. I leave them in the foil. My routine is to take what's in the pot plus the ciclosporin capsules, am and pm. (I know the tac regime is more exacting.) They visibly change if taken from the foil and left in the open air, though in a pill box they might actually be fine - but it's become second nature to treat them as a bit delicate.

Do you have access to a renal pharmacist? We see ours at clinic to order our Healthcare at Home deliveries. He/she would know.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: The Team Tibbs Results are in...

Post by rheaybou »

I put my days meds into a pill container each morning, that way the MMF and Tac capsules are not lef sitting for a week in the open atmosphere. Not sure what difference it may or may not make, but thats my routine and my tac level remains fairly stable - apart from the odd blip.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: The Team Tibbs Results are in...

Post by Tibbs »

That's interesting, I put all my tabs in the boxes every 2 weeks.

I have had one of my boxes get wet and the Tacro tablets (I guess they're actually capsules as they contain powder) were just dissolving.

I think I'll raise this at my next clinic appointment as this may be why my levels are all over the place.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Thumps
Posts: 1302
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: The Team Tibbs Results are in...

Post by Thumps »

I do mine once a week, doesn't seem to have done any harm. The Adoport seems to cope fine - I do get rid of any that have got wet though.
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Re: The Team Tibbs Results are in...

Post by Rik »

blimey ... :shock:
I use a 7 day tablet holder that has one partition for each day ... about £1.50 a go from tesco ...
but I sit and do 8 weeks worth at a time ...cant be hanged to do it every week let alone every day!! :roll:
havent had any issues since starting doing this years ago ...
I also keep an emergency weeks supply in a holiday home that can be left for months at a time ...
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: The Team Tibbs Results are in...

Post by Tibbs »

After getting back from holiday I had my clinic appointment and my creatinine was up to 310 from a baseline of 240-260. Went back the next day and it was still 306. but not going up which was a relief. The protocol at HH is now to do a biopsy at 1, 3 and 5 years, to make sure everything is ok in my graft kidney. I'm coming up on my third transplantiversary, so they decided to move it up and do it today.

A biopsy was booked for today - the second day of my new job! Got there on time and had my biopsy done. Now this is biopsy #7 or so I've had on my native and transplanted kidneys, so I know the score, however something new and different for me. I got a haematoma in the kidney, and normally it just goes out into the surrounding tissue, but mine got stuck under the capsule (the fibrous outside of the kidney), and boy, did it hurt. I basically swells and presses against your peritoneum. The pain started underneath my ribs and went up to my shoulder and down to the biospy site. Wound up needing some iv paracetomol and some tramadol to manage it. 40 minutes later, however it was mostly better. I'm still quite sore, and I'm looking forward to an early night. Rather surprisingly, my urine was totally clear both times, when I was expecting it to be a bit bloody, but I guess the haematoma found it way out while I was lying comatose from the pain killers!

Full results come in a fortnight, so hopefully I don't hear anything until my next scheduled clinic appointment in 6 weeks.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
sporti
Posts: 355
Joined: Fri Aug 25, 2006 7:51 pm

Re: The Team Tibbs Results are in...

Post by sporti »

Hi

i hope the pain is less right now. Sorry to hear this. Good luck with results. xxx
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: The Team Tibbs Results are in...

Post by Tibbs »

It's fine now - went away surprisingly quickly. Thanks :)
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: The Team Tibbs Results are in...

Post by Tibbs »

2 Hospital visits next week. I have an MRA (no idea what the difference is between that and an MRI...) on Monday I think, to look at my kidney. Then on Thursday I'm having a home sleep study to see what's up with my snoring. It's not bad but my (now ex-) girlfriend (very light sleeper) found it tough to sleep next to me. Since I'm in the system for it, I may as well get it checked out.

Hopefully all is well with the kidney. Official results next week I think.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: The Team Tibbs Results are in...

Post by wagolynn »

MRA looks at blood vessels - if that helps.

Good luck.
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: The Team Tibbs Results are in...

Post by Tibbs »

Thanks - I guess they're taking the opportunity to look at my smaller artery.

Not heard anything about the biopsy, so fingers crossed, all is ok.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
sanela
Posts: 422
Joined: Wed Jul 16, 2008 10:22 pm
Location: London

Re: The Team Tibbs Results are in...

Post by sanela »

Hey Tibbs, sorry to see you've had a bit of a rough time lately. Did you have your MRA today? I had one 6 months in, they look at the blood flow into your new kidney. I still have my dvd recording of the test, fascinating viewing it was.
How do you feel, I mean, did you feel any different from your usual normal with higher creatinine? I hope all your results come back normal and that was just a bleep.
As an aside, I am now 6 years post tx and have not been asked to have a biopsy. Is that protocol a recent addition?

Fingers crossed,


Sanela
Walter, 15 september 2009
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: The Team Tibbs Results are in...

Post by Tibbs »

I still feel great - I've certainly not noticed a difference.

The MRA was fine. The radiologist said everything looked great, but I needed to wait until a consultant looked at it to make sure.

Yes, the protocol is new. It wasn't in place when I had my transplant in 2012, though I have incidentally had a biopsy at the right intervals.

I haven't heard anything about the MRA, biopsy or sleep study (did I mention that!?) so I assume all is well. No news is good news seems to be the mantra at Hammersmith. Certainly when anything is even slightly off, I've heard from them!
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: The Team Tibbs Results are in...

Post by SKM23435 »

To go back a couple of subjects - I have spoken to a specialist pharmacist about Adoport and whether you can take it out of its foil and put it in boxes. Apparently not. It is too unstable to be out of its wrapper for a few days before being swallowed. It should be popped out just before taking.

Don't know if this applies to other brands of tacrolimus . If anyone has fluctuating drug levels this may help explain it.

(I love the idea of an unstable drug - makes it sound like an explosive!!).




Tibbs I hope your results are all ok.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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