Currently on only 2 anti-rejection meds...

[KarenInWA]

I am now over 14 months post-tx. My kidney suffered a post-biopsy injury/hematoma, and as a result, my creatinine is anywhere from 3.3 - 3.6. Recently, it stayed at 3.3, but is now back up to 3.6, and my K was 5.2 at my last reading. My neph started me on Benicar 20mg, which can cause that to happen. My tx neph took me off of Myfortic 180mg 2x/day due to low WBC, but that has since been resolved. However, she does not want to put me back on that yet, and I will repeat labs in 2 weeks. The labs I mentioned above were done a week ago, ordered my my tx neph. Today, I did labs for my reg neph to see about the Benicar. My question - does anyone think it is weird that all I am on for anti-rejection right now is 3mg tacrolimus 2x/day and 5mg of prednisone once a day? I also take 81mg aspirin in the morning, 2000iu Vit D3 in the morning, 1 pre-natal vitamin in the morning (NOT pregnant!) and calcitriol 0.25 mcg at night. I also take a Whole Foods "Blood Builder" in the morning, but now my hgb/hct is starting to fall. Ugh.

Oh, and one more thing. My reg neph had wanted me to NOT worry about drinking a lot water, etc, and to only drink when I was thirsty, due to low sodium levels but high BP (which is not really high, is only high in his office, mainly the lower #). Now my tx neph wants me to up my fluid intake, which I am all for. It's been a bit of a see-saw lately...

KarenInWA

[chook]

G'day Karen.
I am 22 months post tx and my meds are 3mg tacro twice a day, 500mg Cellcept (mycophenalate mofetil) morn and night and 10mg pred once a day. I also take 2x calcitriol morning, meds for controlling BP and chol, a longterm antibiotic to guard against flus etc plus vitmains cranberry and lysine. Don't know if this will help, but it will give you someting to compare with. My neph has talked about dropping the tacro a bit more but as yet has not.
Bloody biopsies! I think it is way past the time someone invented a better test for rejection that punching holes in a newly installed kidney. I have no medical training at all but to me that procedure is invasive and just doesn't seem the right way to treat the kidney!
Sometimes it is hard to stay on top of everything. Are you generally feeling okay? Sending best wishes either way!

[okarol]

Jenna is still on Prograf 4 mg morn/ 3 mg evening and 125mg of Cellcept twice a day.
Since her creatinine is 4.2 and BP went up a bit, she is now on 2 BP meds.
No steroids.
Also takes Vit. D, calcium, multi-vitamin.
Not sure this would help you, as she is slowing losing function and is waitlisted for a transplant.

[jeannea]

They recently took me off of cellcept for almost a month because of white blood cell problems. I was on 5 mg of prednisone/day, 5 mg prograf in morning and 4 mg prograf at night. They also took away my Valcyte. I was starting to feel like something was wrong because I didn't have enough pills. I trust them to do the right thing for me. They worked their asses off saving my life 4 years ago and want me to be ok.

[DialysisGoneFOREVER]

Jenna is still on Prograf 4 mg morn/ 3 mg evening and 125mg of Cellcept twice a day.
Since her creatinine is 4.2 and BP went up a bit, she is now on 2 BP meds.
No steroids.
Also takes Vit. D, calcium, multi-vitamin.
Not sure this would help you, as she is slowing losing function and is waitlisted for a transplant.

She is on the list for a cadaver kidney? How long is the wait where you are?

[Rerun]

Karen, I think it is weird you have 2 nephrologists.  Sounds like they need to have a meeting of the minds. 

[sullidog]

I only take 2 rejection meds a day as well. 75 mg of neoral, and 1 mg of rapamune one day and .50 mg of rapamune the next, I alternate with that. They issue I'm having is they keep having to lower the dose for me because my bloodstream responds very well and it doesn't take much for my levels to get too high. I'm also on steroid avoidence so no I don't think taking 2 meds a day is uncommon. I'm on other meds besides that but I'm just letting you know about my rejection meds.

[jeannea]

Rerun, don't all of us with transplants have two nephrologists? My transplant team has nephrologists and they handle the anti-rejection meds. Then I have my local nephrologist and he handles everything else. It has always worked pretty well for me. They communicate If necessary but not often. Sometimes I'll get a call from both offices if my prograf level is off.

[MooseMom]

Karen, during my bout with neutropenia, I was off myfortic and was on only two anti-rejection meds (tac and pred).  Once my wbc issue was resolved, I was back on the myfortic.  So, my question is this:  if your wbc issue has been resolved, why is your tx neph waiting to put you back on the myfortic.  As I recalll, you've had wbc issues in the past, so with that in mind, perhaps that is why she is waiting? 

I still see my local neph, so I have two nephs, too.

[okarol]

Jenna is still on Prograf 4 mg morn/ 3 mg evening and 125mg of Cellcept twice a day.
Since her creatinine is 4.2 and BP went up a bit, she is now on 2 BP meds.
No steroids.
Also takes Vit. D, calcium, multi-vitamin.
Not sure this would help you, as she is slowing losing function and is waitlisted for a transplant.

She is on the list for a cadaver kidney? How long is the wait where you are?

The wait time for a deceased donor here in Los Angeles is 10 years, which is why we hope a living donor comes forward.

Karen, I think it is weird you have 2 nephrologists.  Sounds like they need to have a meeting of the minds. 

Jenna also has two, one for the transplant and the one she's had all along - they coordinate care.

[KarenInWA]

Well, here is my latest in my drug debacle...

When I talked to my tx coordinator earlier this week, she mentiond my tx neph was concerned about my creat (3.6, when lately it had been 3.3) and my K (5.2, when lately it had been in upper 3's to upper 4's). When I saw my tx neph on Jan 10, I mentioned to her that my reg neph wanted me to start Benicar 20mg. He also gave me a lab slip to test K and kidney function, because Benicar is known to mess with that. So, when I had my f/u labs for the wbc, I was 4 days into taking the Benicar, which may be why my numbers were messed up. That was when I was told to drink more water, when before both tx neph and reg neph said I did not need to push fluids.

Friday, my reg neph's office called me. I had those "Benicar" labs done Thursday evening, and my K is up to 5.8 and creat down a bit to 3.5. I mentioned to his assistant that this didn't happen with the K until I started the Benicar. She saw my pattern and said she'd talk to the dr and call me back. So, Friday night, I picked up 2 doses of kayoexalate (or however you spell that crap) and diltiazem 120mg (Cardizem). No more Benicar for me. Low K diet for the next few days, and another lab draw Mon or Tues. I'm thinking Tues just to give the kayoexalate crap another day to do it's thing. Yay fun!

I really wish I hadn't done a biopsy. I have learned my lesson and will never do one again. And, if it really is necessary, then I will *insist* on an inpatient overnight hospital say with frequent ultrasounds for the next few days afterward. If all else fails, the hospital has free wifi and the tv's in the rooms have DVD players.

KarenInWA

[jeannea]

I did have a few biopsies. They were in the last year before my kidney failed. I was suffering and needed answers so I agreed but they showed very little info and caused a lot of anxiety. They were not the cause of my failure. I don't think any biopsies should be done without a really good reason and a possibility the result could actually be informative. Each time mine told us chronic rejection. Anyone with a 10 yr old transplant shows chronic rejection.

I did not know that drug caused kidney issues. Now you know and can refuse it in the future.i hope your levels stabilize.

[MooseMom]

Oh Karen, I think about you so often and am so angry on your behalf.  I've never heard of all of these meds that you are taking.  Is the kayakinginakayakate a powder that you have to dissolve in water and then drink?  It just sounds unpleasant.

Thanks for posting about your trials and tribulations.  I am learning a lot from you!  I am so sorry and am so frustrated that you are having to go through this.

I am unclear on something, though.  Does your tx neph think your damaged kidney could heal and that your renal function could improve?  I apologize if you have already answered this somewhere on IHD.

Please do keep us updated.

[KarenInWA]

Oh Karen, I think about you so often and am so angry on your behalf.  I've never heard of all of these meds that you are taking.  Is the kayakinginakayakate a powder that you have to dissolve in water and then drink?  It just sounds unpleasant.

Thanks for posting about your trials and tribulations.  I am learning a lot from you!  I am so sorry and am so frustrated that you are having to go through this.

I am unclear on something, though.  Does your tx neph think your damaged kidney could heal and that your renal function could improve?  I apologize if you have already answered this somewhere on IHD.

Please do keep us updated.

Hi MM!

That kay stuff is a liquid solution that you drink to treat high K. I think it comes as a powder, then the pharmacy makes it into a liquid. I had to go to a different pharmacy than I usually go to to get it. Thankfully, it's one I've been to before. In fact, it's a well-run pharmacy that was owned/started by a man my dad went to high  school with. I've known of this place for years. I used to want to work there!

As far as my kidney function getting better, it appears that won't be happening. A part of my kidney cortex is injured, and it has healed all it will heal.  Now, it may get a little bit better, but so far, that hasn't happened. In the last few months, my creat was as low as 3.3, it was 3.4 on Jan 10, then about a week later I started the Benicar (my reg neph gave me the Rx in Dec. As you can tell, I wasn't too excited about starting it.) Then I did start taking it on Jan 20. Jan 24th I had labs, which showed my wbc being nice and normal again (yay) but my creat was 3.6 and K was 5.2. Then there was Thursday's labs with the K at 5.8. So, I'm not going back to the tx neph until next year, but she is still active in my care in the background right now. I do know that she is contemplating putting me back on Myfortic 180mg once a day rather than twice a day.

I wonder what life is like when you don't have to think about kidney crap all of the time? Oh, that must be nice...

Oh, and regarding that kay crap. I am very thankful to say that my aniticipation for it was worse than the reality.  I was all convinced that I was going to gag and have a hard time getting that stuff down. Instead, it had some weird candy like flavor to it (reminded me of what I always thought liquid amoxicillin for children might taste like) and it went down with no problem. Not pleasant, but not nearly as bad as I thought. So that was a relief, at least!

KarenInWA

[MooseMom]

Like you, I can't imagine what life is like without having to think about kidney crap.  I have observed that for me, not a single day goes by without some medically related thing popping up, usually some bureaucratic red tape. 

Even though I was diagnosed in 1992, it wasn't until 2004 when I started all of the meds; I'm sure you've read my story over and over again.  I remember that my neph put me on all kinds of meds, and for the first six months, I felt really weird.  One of the meds was some stuff I just called "grit" because that's what it was; it was some sandlike substance you could mix with water or juice and then drink.  Oh!  It was "cholestyramine" used to reduce cholesterol levels (mine was 550  ).  Well, I cried every time I had to drink it (at least twice a day).  I am the most compliant patient I know, but I couldn't bear this crap, and I finally told my neph that I really needed to change meds.  Thankfully, he prescribed something else, and I've been taking it ever since with really good results.

OK, so you surmise that your kidney has healed as much as it is going to.  So my next question is does anyone think that your renal function will decline because of the injury?  I know that we are all in chronic rejection; it's just a matter of speed and degree.  But do you think that the long-term effect of the hematoma itself will be a faster rate of decline?

That's interesting that your tx neph is thinking of putting you on the myfortic again but at a reduced dosage.  I guess it's a matter of trial and error.

So, labs on Tuesday then?  How do you usually receive your results?  Do you call the lab to get them quickly?  I am authorized to get verbal results and/or to have them mailed to me, but the mail really is outpaced by snails these days, so if I am anxious about the results, I call the lab.

I'll be waiting for your results!

[KarenInWA]

OK, so you surmise that your kidney has healed as much as it is going to.  So my next question is does anyone think that your renal function will decline because of the injury?  I know that we are all in chronic rejection; it's just a matter of speed and degree.  But do you think that the long-term effect of the hematoma itself will be a faster rate of decline?

That's interesting that your tx neph is thinking of putting you on the myfortic again but at a reduced dosage.  I guess it's a matter of trial and error.

So, labs on Tuesday then?  How do you usually receive your results?  Do you call the lab to get them quickly?  I am authorized to get verbal results and/or to have them mailed to me, but the mail really is outpaced by snails these days, so if I am anxious about the results, I call the lab.

I'll be waiting for your results!

MM, to answer your first question, I'll be honest. I haven't asked that because I'm afraid of the answer. Honestly, I think their answer is that there's really no way of knowing. People who have been excellent matches end up rejecting and going back on dialysis within the first year for no known reason, so in the end, it really is all a crap shoot to some extent.  Thankfully, those who reject fairly quickly are rare.

Yep, labs on Tuesday, at my local hospital. I was born there, volunteered there as a teenager, had my first job there, had my dialysis accesses put in there, gall bladder was removed at out-patient facility in their parking lot, and I received my Aranesp shots there a couple of years ago. I know that place well lol! What is nice about going there is you are free to pick up your lab results at anytime once they're available. You show up to the lab, fill out a release sheet, they copy your ID and then hand you your results. When I have labs done at the UW, I get to view them online. I even get to see all the dr notes and nurse notes for the past 3 years. Labs online are only available for 30 days.  I've been lucky in that regard.

KarenInWA

[cariad]

Oh, and regarding that kay crap. I am very thankful to say that my aniticipation for it was worse than the reality.  I was all convinced that I was going to gag and have a hard time getting that stuff down. Instead, it had some weird candy like flavor to it (reminded me of what I always thought liquid amoxicillin for children might taste like) and it went down with no problem. Not pleasant, but not nearly as bad as I thought. So that was a relief, at least!

*shudder*
It's been 36 years and I still remember the taste. Muddy, gritty, cloying. I'm glad you didn't find it too horribly intolerable, Karen.

[chook]

I think it's called risonium (sp?) here in Australia - one word for it BLURK!!!!! Glad you downed it okay Karen and it is mind boggling to read your figures and drug changes - good luck with all.

[MooseMom]

one word for it BLURK!!!!!

Oh SNAP!  I love that word!  BLURK BLURK BLURK BLURK BLURK BLURK BLURK!

[MooseMom]

MM, to answer your first question, I'll be honest. I haven't asked that because I'm afraid of the answer. Honestly, I think their answer is that there's really no way of knowing. People who have been excellent matches end up rejecting and going back on dialysis within the first year for no known reason, so in the end, it really is all a crap shoot to some extent.  [/quote}

Yep, I hear ya.

Yep, labs on Tuesday, at my local hospital. I was born there, volunteered there as a teenager, had my first job there, had my dialysis accesses put in there, gall bladder was removed at out-patient facility in their parking lot, and I received my Aranesp shots there a couple of years ago. I know that place well lol! What is nice about going there is you are free to pick up your lab results at anytime once they're available. You show up to the lab, fill out a release sheet, they copy your ID and then hand you your results. When I have labs done at the UW, I get to view them online. I even get to see all the dr notes and nurse notes for the past 3 years. Labs online are only available for 30 days.  I've been lucky in that regard.

Oh, that IS good.  I get my labs done at Quest Diagnostics, so no personal treatment there!  When I get my labs done at Madison, though, I get them by the time I see the doc/nurse/neph/whoever, which is in about 90 minutes.

[KarenInWA]

Just wanted to give you all an update - Now that I am off of the Benicar and did my 2 doses of kayoexalate whatever, my potassium went from a 5.8 on Thursday of last week to a 4.4 on Monday of this week! Yay!!!

More labs will be done on Sunday, which is ordered by my tx neph.

KarenInWA

[natnnnat]

Sorry to hear about this (confusing) business with the injury to your kidney's cortex Karen. 

Before he went on dialysis this January, Gregory was on the following prescriptions:

Sodibic   100ml   2xtwice a day
Caltrate      1x3D
Caltrate+D      2x3D
Calcitriol      1xonce per day am
Cellcept   250ml Mirna said stop    1xBD  (telephone call 16/01/13)
Valgancyclovir   500ml   MWF
Prednisalone   15mg (didn’t work, took 20mg)   1x1D am
Aranesp   60micrograms   1 injection every three weeks
Bactrim Septrin Forte   Rimethoprim 80mg
Sulfamethoxazole 400mg   every second day
Betaloc   50ml am and 50ml pm   0.5 tablet=50ml, twice a day
Thyroxin   200(micrograms?)   M,W,Fri,Sat,Sun
   150(micrograms?)   Tu, Thu
Renegel      3 every meal and with every snack

He had relatively good labs except for creatnine which was sitting around 650 till it spiked to 855 at the end.

[Sax-O-Trix]

I only have one nephrologist...  My original nephrologist was on the transplant team.  When I knew I needed a nephrologist, I went directly to the nearest hospital with a transplant program and requested a nephrologist.  The first two came and went, then I was assigned the neph that I had for 5 years or so before I was stage IV - V.  My transplant program has three level of care after a transplant and you graduate to each level.  My pre-transplant neph was to be my third and final level, but they moved him to level 1.  Now I will end up with a new neph whom I have never met.  I liked my pre-transplant neph and was looking forward to returning to him.  Oh, well...

[KarenInWA]

It's been a while since I've updated my so-called drug life so, here goes...

I was put back on the Myfortic 180mg 2x/day. I've been back on it now for just over 2 weeks. My WBC is in the high normal range for now, but I've only just begun, and that was taken at about a week and a half into it.

I was taken off the Benicar, like I mentioned above, and put on diltiazem 120mg Extended Release. BP is good. However, at my next 2 labs (including this recent one done on Sunday) my tacrolimus levels have gone up slightly. The goal is to keep it in the 5-8 range, but it was 8.6 and then 8.9. This concerned my reg neph, who couldn't figure out why it went up.

So, the other night I was sitting here at home contemplating this, when I suddenly remembered something. The pharmacist at the pharmacy where I picked up the diltiazem (not my normal pharmacy - I went to that one because I was also picking up that gritty kayoexalate stuff, which apparently, not every pharmacy has) and the pharmacist asked me if I was taking any other meds. I vaguely remembered her saying something about the BP med and tacrolimus. So, I looked it up online and sure enough, there was a drug interaction.

So, I called the transplant coordinator and left a message. (They were the ones who ordered this latest blood draw). When the TC called back, she let me know that I impressed her, the pharmacist and the tx neph by figuring out my own problem! Score one for me!!! So, I'll be taking a lower dose of the tacrolimus (right now I take 3mg 2x/day, so I'm assuming I'll go down to 2.5mg 2x/day) and we'll go from there. Next labs in 2 weeks!

KarenInWA

[MooseMom]

I LOVED My So-Called Life!!  My husband bought me the series on DVD for my most recent birthday.

Good for you for solving your medical mystery!  We not only have to be our own best advocates but also our own best detectives. 

Good luck on your next set of labs!