Replies to This Discussion

Permalink Reply by Linda Jacobus Toscano on March 13, 2012 at 10:38am

My daughter had a liver transplant also in 2009, and she has had major rejection problems. She also had thymoglobulin and lots of steroids and way too much prograf. Her creatinine only went up to 2.7, when I took her for a second opinion, which I believe saved her kidneys. She was switched to Rapamune as her primary immune suppressant, and her Prograf was drastically reduced. Her creatinine is now 1.0 (which is still a bit high for someone who weighs 80 lbs.), they say she does have has CKD caused by Prograf, but she is not near to a kidney transplant at this time. I do feel your pain though. Would not be surprised if this is in my daughter's future at some point. Regarding the low counts, we had same problem with her. We went back to our brilliant second opinion doctor, and he said it was most likely a side effect of Bactrim! Do you take that? Jessica is now off Bactrim and taking inhaled Pentamidine monthly for PCP prevention (there is also Mepron available to replace Bactrim). This is a recent change, but we have already seen her white count and her hemoglobin coming up. Jess also gets an injection of Erythropoiten from her kidney doctor, which has helped to bring up her hemoglobin. He says that low hemoglobin is bad for the kidneys. By the way, are you still rejecting the liver, or have they brought that under control?

Permalink Reply by Sue on March 13, 2012 at 3:48pm

I had a liver tx in July of 1998. I take Rapamune and Prograf for my liver. I have been in dialysis for 3 1/2 years now. My creatinine is now down to 5.6 but started out at 10.3 but all of my other labs are normal, the labs are done monthly. I was told not to have a kidney tx due to my liver tx........in which I got Ptogressive Multifocal Leukoencephalopathy (PML). PML is rare but it affects parts of your body mildly but does affect your kidneys. I wish I could have a kidney tx since I was born with only one and it is now ruined. I consulted several kidney doctors and my gastroenterologist who takes care of my liver which was txed in Omaha at UNMC and all said the same thing..........NO !

Permalink Reply by Stevep on March 13, 2012 at 8:50pm

I had a liver and kidney tx at the same time.  I was on the list for a liver tx and after about a year my kidneys failed and I needed both.  They said they wanted to wait until I get both from the same donor.  I was very lucky because they called me about 4 months later and told me to get to the hospital because they had a match for me. After about 10 hours of surgery I had a new liver and kidney.  The last 4 months while waiting for a donor, I was on dialysis and had no problems.  While I was on dialysis they had me drinking a food supplement called "Nepro", made by Abbott Laboratories which is the same thing as Ensure (which Abbott also makes) except that it is made for people on dialysis or with kidney problems. I really think that this supplement helped keep my nutrition levels up while I was on dialysis and waiting for the tx. My tx was 10/7/09. I take prograf and the Dr's keep my blood levels around 4.5 to 5. I still get my blood tested once a month to keep on top of things. I also found that it is a good idea to get a copy of your blood tests and learn how to interpret them. It saved me from a kidney rejection.  Good luck, I'll put you in my prayers. Steve 

Permalink Reply by Teresa on March 16, 2012 at 10:49am

I am off of all immunosuppreants except for Rapamune 1mg/day and Prograf 4mg/day. My kidney specialist has been hesitant to give me erythropoiten as he is concerned about chances of strokes that sometimes occur with this med. My liver numbers look greatand have for a year now...just having trouble with WBC's, Hgb, platelets and kidney failure. I have even ahd a bone marrow biopsy and the oncologist that did that said that the marrow is just slow to produce cells, but in time that should get better - that has been 5 months ago and still no cells. I have also had Neupogen shots - made no difference. My cells are stubborn little things, leaving me scared of surgery any time soon.

Linda Jacobus Toscano said:

My daughter had a liver transplant also in 2009, and she has had major rejection problems. She also had thymoglobulin and lots of steroids and way too much prograf. Her creatinine only went up to 2.7, when I took her for a second opinion, which I believe saved her kidneys. She was switched to Rapamune as her primary immune suppressant, and her Prograf was drastically reduced. Her creatinine is now 1.0 (which is still a bit high for someone who weighs 80 lbs.), they say she does have has CKD caused by Prograf, but she is not near to a kidney transplant at this time. I do feel your pain though. Would not be surprised if this is in my daughter's future at some point. Regarding the low counts, we had same problem with her. We went back to our brilliant second opinion doctor, and he said it was most likely a side effect of Bactrim! Do you take that? Jessica is now off Bactrim and taking inhaled Pentamidine monthly for PCP prevention (there is also Mepron available to replace Bactrim). This is a recent change, but we have already seen her white count and her hemoglobin coming up. Jess also gets an injection of Erythropoiten from her kidney doctor, which has helped to bring up her hemoglobin. He says that low hemoglobin is bad for the kidneys. By the way, are you still rejecting the liver, or have they brought that under control?

Permalink Reply by Linda Jacobus Toscano on March 16, 2012 at 12:31pm

Hi Teresa,
My daughter's meds are the opposite. Rapamune is a 4mg. daily and Prograf (the more kidney damaging one) is at 1mg., twice per day. She is supplemented with Cellcept and a little prednisone (which are I think OK for kidneys). Don't know what center you go to, but I personally think anyone in your situation should get a second opinion. Me and my 'liver mom' friends have found that there can be a huge difference between centers. And two transplants is a pretty high stakes situation. I think all insurances pay for it, because it is a patient's right. As far as the Erythropoietin, we questioned it for the same reason. The doctor said that it is pretty safe as long as they don't bring your hemoglobin up to a really high number. So we make sure to have frequent blood tests. Jess has only come up from 9.5 to 10.5, so she is still technically low. But I was really nervous with that med in the beginning. In fact, I am nervous with most of these meds, there seem to be so many scary side effects.

Permalink Reply by Teresa on April 18, 2012 at 9:39am

The rejection of the liver is completely under control and has now been for about a year - thanking God for that. I have only been on Prograf 2mg twice/day since October 2010. I also take Rapamune 1 mg/day. Prednisone, Bactrim, Cellcept have all been discontinued for quite a while now. They had my Prograf levels around 12-13 while hospitalized for the rejection and the thymoglobulin they used for the rejection and huge doses of Solumedrol 1000mg/day IV took their toll - along with polycystic kidney disease. My nephrologist won't give me erythropoetin as in his opinion the risks for stroke are just too high. I am scheduled now for the kidney transplant on May 21st as my dear friend of 34 years has offered to donate to me and miraculously is a match! I am SO ready to have a life again - I am scared going into this as they are calling it a "complicated transplant" due to very low WBC's (1.3), very low Hgb (8.3) and very low platelets (64). Please pray that all goes well. I have a little 4 year old grandaughter that needs me - as I do her - ha! ;o) I agree with you so much about the meds - I often feel like I am putting poison into my mouth 3 times/day - looking forwrd to better days ahead! Thanks for your response - Teresa ;o)

Linda Jacobus Toscano said:

My daughter had a liver transplant also in 2009, and she has had major rejection problems. She also had thymoglobulin and lots of steroids and way too much prograf. Her creatinine only went up to 2.7, when I took her for a second opinion, which I believe saved her kidneys. She was switched to Rapamune as her primary immune suppressant, and her Prograf was drastically reduced. Her creatinine is now 1.0 (which is still a bit high for someone who weighs 80 lbs.), they say she does have has CKD caused by Prograf, but she is not near to a kidney transplant at this time. I do feel your pain though. Would not be surprised if this is in my daughter's future at some point. Regarding the low counts, we had same problem with her. We went back to our brilliant second opinion doctor, and he said it was most likely a side effect of Bactrim! Do you take that? Jessica is now off Bactrim and taking inhaled Pentamidine monthly for PCP prevention (there is also Mepron available to replace Bactrim). This is a recent change, but we have already seen her white count and her hemoglobin coming up. Jess also gets an injection of Erythropoiten from her kidney doctor, which has helped to bring up her hemoglobin. He says that low hemoglobin is bad for the kidneys. By the way, are you still rejecting the liver, or have they brought that under control?

Permalink Reply by Linda Jacobus Toscano on April 18, 2012 at 3:45pm

Hi Teresa. Congratulations, what a wonderful friend! Really weird about all those low blood counts, that is called pancytopenia when all three counts are low. Hope the doctors can figure out the cause. Maybe it will improve after the kidney transplant.

Permalink Reply by Teresa on June 5, 2012 at 8:06am

Just wanted to update all on my kidney transplant...On May 14th, my best friend of 34 years donated a healthy kidney to me. I am now 3 weeks post-op and doing wonderfully - actually have felt great from day one after transplant! My Creatinine is 1.2 at the 3 week mark, meds and their side effects are a bit high for now, but I am managing these pretty well too. I am feeling incredibly blessed to have yet another chance at life - what an incredible feeling to have energy again! I feel like I have a perpetual smile on my face - finding enjoyment in each little thing! My donor is recovering nicely also - though her surgery was laprascopic, it has been a harder road for her - after all she gave up an organ and I gained one. I will be forever grateful to her - I live because she had the heart to give! My blood levels are about the same (WBC,Platelets,Hgb) - praying in time they will recover too - one day at a time!! HOPE -such an awesome definition for my future - forever blessed x 2~ Liver transplant 11/23/09 and kidney transplant 5/14/12,    Teresa

Permalink Reply by Haris on July 4, 2012 at 10:05am

Hello Teresa,

My father had liver transplant 1.5 years ago. Because of high dose of pangraf his Creatinine  is 3. Doctors thinking of kidney transplant. I just want to ask how was you experience  with kidney transplant after liver transplant. 

Thanks,

Blessing for you health   

Permalink Reply by Teresa on July 4, 2012 at 10:41am

I am doing great! The kidney transplant took place on May 14th - just 6 weeks ago and I feel super! Creatinine is running between 1.2-1.5 - just where they wanttit to be and my energy level was much better within a day or two of transplant. The surgery itself is MUCH easier than the liver. Meds are pretty high for now, but will be decreased over time. My donor was my best friend of 34 years - I am very blessed! I will be praying that your father can get a transplant too. My Creatinine before surgery was almost 6.0. Felt pretty awful then. Teresa

Permalink Reply by Haris on July 4, 2012 at 10:47am

Thank you may God bless you.

Permalink Reply by laura on July 6, 2012 at 11:55am

Mornig,I heard of this happening. As for me hasn't happen or maybe I have ignore it. The only time I can remember for rejuction I was put on myforlic. Keep in touch and keep smiling

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