For some reason after being stable for quite awhile now my Prograf levels have been causing troubles here lately. I was always one of those who had to take a fairly large amount of Prograf to get my levels to where they need to be. Well that was then I guess!! I had gone into the hospital for a couple days right after Christmas for what they seemed to think was a 24 hour bug or something. About a week after I had regular labs my Creatnin was up and when we got the Prograf levels next day we found out why it was up to 23 and it was supposed to be around 8-11 at this point. My coordinator and I thought that maybe I was given too much Prograf in the hospital. I was on 7/7 then so they had me hold my Prograf that morning and then reduced it to 5/5. I had labs done a few days later and it was back around 10 so I stayed on that dose. A week after the initial labs I was tested again and this time it was back up to 13, okay that's weird we all thought so again they lowered my dose to 4/4. My next level was back up to 20!! At this point we are trying to figure out anything that it could be. There are no new meds, nothing has changed in my diet it's kind of mind boggling!! So they lowered me to 2/2 and I just had labs yesterday and I am back in range!! What a time it has been! We are just going to leave things the same and recheck everything with full labs on February 2. Talk about an ordeal!! My coordinator is kind of worried about lowering it so much it's such a balancing act and I've never really had problems with it like this before. I am about 18 months out from my transplant. I am hoping this sets things straight for awhile keeping my fingers crossed that's for sure!!

If any of you have had similar experiences please let me know I'd be interested to hear anything you have to share!! Otherwise things are going great and I am definitely thankful for that!!

:-)Heather

Views: 1240

Comment

You need to be a member of TransplantCafe.com - The Gift of eLife! to add comments!

Join TransplantCafe.com - The Gift of eLife!

Comment by Nancy Lee Schipper on July 15, 2009 at 5:15pm
Heather,
My Prograf situation is exactly the same as your was in January. Just the past few weeks, going from a pretty stable Prograf level to a 20 - 3 weeks ago, cut down on Prograf to normal to a 22
today. Cut back again to 2/2. We have no answrer either for these strange levels. I too had my
P/K tx 18 months ago and all was going great -- until 3 months ago when a biopsy should slight
pancreas rejection so a lot of meds and IV's later we have it much better. But now dealing with
the Prograf level. I trust by now you are having good reads and what does your Prograf dose consist of now. Seems like everyones varies so much. Yes, these meds are quite the balancing
act. I too go from lab to lab, phone calls.
Have you been feeling good all this time?
Check back with me.
Nancy Schipper
Comment by Heather Hazlett on June 25, 2009 at 9:55am
Ah yes thankfully we got them back under raps! I started out the year at 7/7 and ended up at 2/2 and that's where I have been since January or February! My coordinator kept going over all the things that could make Prograf higher and I kept saying haven't done that nor that! Sometimes I thiink our bodies just have a mind of their own! I am back to labs just once a month for now!

High levels of Prograf can increase your potassium I do know that from experience! Immediately after transplant I had to take higher than normal amounts of prograf so they put me on Kaexolate (don't know if that is how to spell it sorry) and then eventually I was on Florinef, but since my prograf levels have gone down I am off of the Florinef. Oh I forgot they put me on sodium bicarb 3 times a day also to help the potassium problem. I still pay close attention to the high potassium foods, but in general now the level is pretty good.

Good Luck!
Comment by LISA WILSON KNIGHT on June 25, 2009 at 9:48am
Since your post was in January I thought maybe you have gotten prograf levels back in range. I am 11 months post op, and was doing great for the past 7months 6/6 then all of the sudden my levels shy rockted held doses, lowered to 5/5, then 4/4 and finally 3/3, and of course they are bottomed out, and on top of all of that my potasium is 5.5. Any ideas anyone?
Comment by Heather Hazlett on January 23, 2009 at 3:53pm
Cheryl I know what you mean about the phone ringing thing usually I can just tell from my transplant coordinator's voice what is going to come next!! The first time it went up to 23 she called me at about 7 AM to make sure I didn't take my meds until she figured out what to do next that one really got me worried!! I have had my transplant for 18 months now and the first several months were definitely ones of adjustment, but this came as a BIG surprise!! I do hope they get you all straightened out, Good Luck!!
Comment by Heather Hazlett on January 23, 2009 at 3:44pm
Thank you for both of your comments!! No I haven't added grapefruit to my diet I was aware of that right after transplant that's why this is all so very strange. No medicines have been changed in a very long time. I had heard on a transplant group that sometimes people just become more sensetive to it. I'm just hoping with the readjustment we can get things back to normal!! I actually take Florinef to help with high potassium which was due to the large amount of Prograf I used to be on maybe I will get to go off that one eventually. I see my Nephrologist on Feb. 2nd.
Comment by Ann on January 23, 2009 at 11:37am
You have not added grapefruit to your diet have you?
Comment by Donald Nygaard on January 23, 2009 at 11:10am
Mine has been pretty stable for 8 years, starting high and now maintaining level 5, with 2mg and 2 mg/day. I suppose other meds can cause problems. I just dropped my ursodiol, so I hope my level remains the same.
Comment by Cheryl on January 23, 2009 at 9:33am
Well, i have the opposite problem. My prograff level went to nil!! No change in diet, meds, etc except my coumindin med. i don't know if thier is a link or not, bu I am starting to think that changing and adjusting meds is an ongoing thing. I got my liver x last may, didn't get out of hospital until nov and my meds changed weekly !

I wish you well... i sometimes dread the phone ringing as it might be the doc telling me well.. we need to check on .blah blah. LOL

Photos

Loading…
  • Add Photos
  • View All

Latest Activity

Jeff Clardy posted a discussion

Surgery after transplant

I recently injured my hand and now have to have surgery on it to repair it. They are going to be putting me out for the surgery. Now grant it, I, on a regular basis go to my transplant center for different procedures(ie;allomap, biopsies, heart caths, etc) and feel completely at ease in doing so, it has been 4.5 years since my heart transplant, Yet I have found myself with a lot of anxiety going into this surgery, one that they are putting me under, two, it is not at my transplant center but at another hospital. It is really weird that i seem to have more anxiety concerning this surgery then I did about my transplant. The faith I have been granted affords me to have confidence in my eternal destiny to be with Christ and that is what/and has guided me through my entire transplant journey. Can anybody shed some light on their experience they have had with other surgeries following transplant. With a grateful heart, JeffSee More
8 hours ago
Karen Harrill replied to Phil Keyes's discussion Post transplant blues
"Hi Phil, Before transplant I had hepatic encephalopathy which my gastroenterologists treated with medication. My reflexes were slow and my judgement was often faulty. Until the fall before my following Spring transplant these episodes were few. They…"
yesterday
Karen Harrill replied to Bornali's discussion In distress ..may be just need to hang on in the group Acute Liver Failure Transplants
"Hi there! I notice people are not that active on this page. I had acute liver failure, had a transplant in 2011. I take 3mg of Prograf only. I also, on the advice of my Mayo Clinic transplant surgeons take the vitamins Calcium, E and magnesium. I…"
yesterday
Karen Harrill added a discussion to the group Acute Liver Failure Transplants
Thumbnail

My Acute Liver Failure was the result of Hepatitis C contracted during an emergency C-section in1978!

I lived with stage 4 (end stage) liver disease for 15 years. The fall of 2010 was the beginning of a rapid decline. I received a transplant in May of 2011. As you know a transplant gives you a new life but does not cure the hepatitis C, it begins its damage of your new liver immediately. Thanks to the incredible staff of the Mayo Clinic Liver Department and new drugs Solvaldi and Olysio I have been virus free for over 5 months and hope that my 6 month blood test will be still be negative. Interferon and ribovarin would show no virus and then a month or so it would rear it's ugly head. I had no side effects from the two new drugs. These drugs are very very expensive but I was fortunate that Mayo knew where to go for help with these two drugs whose combined costs is $58,000 per month for 3 months. $174,000.
yesterday
Karen Harrill joined TransplantCafe.com's group
Thumbnail

Acute Liver Failure Transplants

A group for those of us who had a liver transplant due to acute / fulminate liver failure. Here we can discuss our experience with this unexpected form of organ transplant including psychologically, physically and all else that goes with it.
yesterday
Profile IconKaren Harrill, Parent of B and Ali Barton joined TransplantCafe.com - The Gift of eLife!
yesterday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"Makes sense to me. Good one David."
yesterday
Ali Barton and Karen Weddick are now friends
yesterday
Ali Barton updated their profile
Monday
Lloyd Hopes liked TransplantCafe.com's group Share Your Transplant Story
Monday
David Goodman commented on Lili Feldman's group The Funny Bone
"At a local bar in downtown St Paul, the owner and bartender, was so sure that he was the strongest man around, that he offered a standing $1000 bet.  The bartender would squeeze a lemon until all the juice ran into a glass, and then hand the…"
Monday
Caring 4 Carrie posted a status
"This is Mr. Ben Boyd. He's been a kidney support for our Cause. However, he was injured and seeking help. http://www.gofundme.com/e1wtg8"
Monday
Caring 4 Carrie posted a blog post

How Does The Kidney Filter The Body?

According to Yahoo, the kidneys perform their life-sustaining job of filtering and returning to the bloodstream about 200 quarts of fluid every 24 hours. About two quarts are removed from the body in the form of urine, and about 198 quarts are recovered. The urine we excrete has been stored in the bladder for anywhere from 1 to 8 hours. See More
Monday
Linda Desi shared a profile on Facebook
Sep 10
Lloyd Hopes joined Sara Castro's group
Thumbnail

Heart Transplants

Heart Recipients can get to know one another. Discuss medication, issues, blessings, concerns, etc.
Sep 10
Lloyd Hopes joined TransplantCafe.com's group
Thumbnail

Latest Transplant News From Around The World

View the latest transplant news videos added to the internet and find links to the latest news stories!
Sep 10

quick links!

 follow transplant cafe:

Find us on Facebook Follow us on Twitter Subscribe to TransplantCafe

Meet Members by Transplant Type

Heart Kidney
Liver Single Lung
Double Lung Pancreas
Intestinal Bone Marrow
Tissue Kidney / Pancreas
Other Transplant

Badge

Loading…

© 2014   Created by TransplantCafe.com.

Badges  |  Report an Issue  |  Terms of Service