Saw my Neph today and we're making some changes

[kellyt]

Well today was the first visit since transplant that I left the office a little bummed.  Not because anything bad is happening, but because it's time to make some medication changes due to quirky labs and as anyone who's had a transplant knows you just get a little nervous.  Maybe I shouldn't speak for everyone, but I would assume that to be normal.  Right?

My neph thinks I might have a tad bit of Cellcept toxicity, so we're reducing my Cellcept from 4/4 to 3/3.  Also, my Prograf level is in the 9's (which BTW he's ok with being that it's in the range they want it to be in 5-10), but because I feel like I'm vibrating when I lie down to go to sleep at night he's going to reduce it by 1 mg in the p.m., so now I'll be taking 3/2.

Also, my creatinine is up a tad to 1.34 (normally at 1.1).  So I'm making the medication changes beginning tonight and I'll have my labs redrawn Monday a.m. and hopefully we get back on track.  He assured me that there would be other signs if I was having a mild rejection episode and he's confident that it's a medication thing.  I'm having no fevers, no pain in or over the new kidney, etc.

He also put me on Lasix to be taken as needed and K-Dur (Potassium).  I tend to wake up more swollen than when I go to bed, so he wants me to take the Lasix in the morning, but only if I need it.  I can't even get my wedding ring on in the morning.  He also noted a little bid of fluid retention in my legs, but nothing too major.

Bottom line, I guess, is that I'm feeling and doing well, but it's time for some medication adjustments.  Other than that it's all good. 

[Rerun]

Reduction in medication is a good thing.  The less you are on the better as long as your labs are good.

1.3 is wonderful!  Keep up the good work!!

                               

[G-Ma]

 

[kellyt]

Thanks Rerun.  You're right.

I'm being too negative.

[MandaMe1986]

Yes it dose sound like your doing good. Try not to worry until there is a big reason to.  Glad to hear your kidney is still doing good.

[pelagia]

Rerun is absolutely right, Kelly.  If they are dropping the doses it's because you don't need quite so much and why suffer the side-effects unnecessarily?! 

[willowtreewren]

Deep breath, Kelly.

This really sounds like a good thing. I'll be thinking of you!

Aleta

[kellyt]

Again, thanks everyone.  It's so nice to have input from people who know. 

Also, he suggested I switch my Prograf/Cellcept times from 6 a.m./6 p.m. to 9 a.m./9 p.m.  What times do others here take their anti-rejections?

[MIbarra]

I take mine 9 and 9. They played with my prograf a bit too. My creatinine goes from 1.5 - 1.8. I noticed the last time it was on the lower side that I had not had any red meat for about a week. Not sure if that has any correlation or it was in my head, but I thought I had read somewhere that eating a bunch of meat right before your labs can make it a little out of whack. (I'm big on meat sadly, though I try to watch my intake on that..)

[kellyt]

I eat red meat in burgers or fajitas mainly, but not a lot.  I know I'm only six months out, but my creatinine has been extremely consistent at 1.1.  I was just bummed.  Not freaked, but bummed.  But I should get used to fluctuations.

Do you like 9 and 9?  Do you have problems with those times?  I haven't had any problems with 6 and 6, except the night before labs I hold my meds until 8:30 p.m. and he said that wouldn't be necessary if I just changed my times, so I did.  I'm now officially 9 and 9.

[Wenchie58]

Kelly...
   I do my meds at 8 and 8.  Works out well around labs and work and such.  They run my prograf levels at about 10.  And reducing prograf will also help your creat to drop.  You're rockin girl...my last creat was 2.6!  It seems to want to settle around 2.5 and since that is much much better than my native kidney was doing...we will take it!
  My neph continually tells me not to "sweat the numbers" it's difficult not to freak out a bit over them.  Keep smilin Girl. Sounds like you're doing GREAT!

[okarol]

Jenna takes her meds at 9:30 AM & PM because her labs are always around 8 am and that gives her plenty of time before she takes them (she's always fasting for the labs too.)
Fluctuations are to be expected - particularly if you are a little dehydrated (I know, it doesn't seem possible to be dehydrated AND retaining fluid, but it is.)
I would have it rechecked before making major changes if it were me. When was your last previous lab before this one? When do they plan to recheck your creatinine after this adjustment?
You're doing good - try not to worry!

[kellyt]

My last labs were done in April (early April) and my re-check will be drawn on Monday a.m.  He said he preferred 48 hrs, but since that will be Saturday he's fine with Monday.

[monrein]

I just had my Cellcept reduced to 750mg (3) from 100mg. (4) twice a day.  I take my meds at 10 and 10, mostly because they like me to hold the tacrolimus until blood is drawn and I usually do blood work at 9 in the morning.  My creatinine has been amazingly low (70 at last reading) but it went up to 103 when I was in hospital recently to have my failed transplant taken out.

Sounds like you're doing well Kelly.  Keep it up.

[pelagia]

Stephen takes his prograf at 8am/8pm and his cellcept at 10am/10pm.  I think the clinic's rationale for splitting them up is that it should be less stressful for the kidney.  Sounds like everyone else is taking everything together, morning and evening.  On the days that he has his blood drawn (only 1x per month now), he just pushes the times and adjusts to split the difference for the next day.  He also has to do a lot of adjusting of times when he travels.  He tries to stay as close to his normal schedule as possible, but sometimes has to slide  over the course of a few days into something that will work better.  I figure the key thing is to keep drug levels as constant as possible because levels that are too high or too low can both cause problems.

[Run8]

You are alll so smart. It's a honor to you you all. Good job Kelly

[paul.karen]

Here is some input from someone who isnt in the (know) of it all.

Sounds good KellyT.   

But i can understand your nervousness as well

[Romona]

Hi Kelly! I had a jump in mine last summer. Mine runs like yours 1.0- 1.1. It jumped to 1.4 and some of my other numbers were off. They ran my labs a few days later and it went down. They determined I was a little dehydrated. I had my immune function tests done this week and out of the blue they called and said I was doing very well and they felt safe dropping my Prograf to 4 mg once a day. I am so happy. I also get that buzzy vibrating feeling. It is easy for me to say relax, you are doing well. But I want to reassure you. They only anti-rejection drug I take is Prograf. I take it between 7-8 a.m.

[kellyt]

You are alll so smart. It's a honor to you you all. Good job Kelly

I totally agree!  I shudder to think of the state I'd be in had I not found this group!  SHUDDER!!!!   As much as I love my Nephrologist and his team, as well as my transplant doctors and their team, the information just doesn't flow from their lips to my ears like it does here.  On IHD I get answers to questions that I don't even ask!   It doesn't get any better than this!!!!

OMG!   That reminds me, I need to send in my check that I promised Sluff MONTHS ago!!!

[paris]

Hi Kelly, you have had such a great transplant experience!  I think it would be hard not to be a little nervous about changes.   You are doing so well, it gives me great hope for life after a transplant.