I was tx on 9/28/2011 and went from a 320# ascites filled man at the time of surgery down to 200, 8 weeks later, I was on prograf 7 and 7, I was starting to become concerned about the wt. loss that I couldn't stop, finally after power packing everything I ate to stop the loss it turned around, now my prograf is at 4mg and 4mg and I feel okay but zero energy and I have this tremendous appetite that is never satisfied, the weight is becoming a problem now and I  would like to know if this is part of the recovery process or the meds or just me.

Views: 1253

Reply to This

Replies to This Discussion

Its the Meds, let me quess ur on Prednisone. I am a Liver Transplant as of 1-1-11, and have been told by many that the Prednisone causes that. I can't seem to get enough to eat either and have had to do alot of exercising to just maintain let alone losing any weight, but as I tell my girlfriend, better fat than dead, lol. Good luck and hope all else is well

Hello Richard,

Are you on any type of steroids?  Ex:  Prednisone.  Steroids make you want to eat  I lost 65 pounds before my transplant and have gained 1/2 of it back due to steroids  I haven't heard anyone with weight gain from Prograf but it certainly affects all of us differently.

Blessings to you.

No prednisone, I was on 80mg prior to tx but zero now, maybe my nerves, my energy is low, I exercise at the gym but after 2 weeks of going I don't have the energy to leave the house and am bed ridden for 2 weeks, very frustrating. Thank you

I had weight loss after transplant, but weight stopped at about 200 and has stayed fairly close since.  My energy level was also a zero, but my appetite was normal. 

 

After 15 months of regular walking and exercising my energy level returned to about 95%.  My doctor told me that liver transplant patients do have low energy and may last up to one year.  I had accepted the fact that I was going to not return to my prior energy level, but it finally returned.

 

The hunger may be nerves, boredom, mild depression due to the low energy or that with a new liver everything tastes better.  I really feel that exercise helped me, but I had to work my way up to exercise very slowly. 

Thank you Joe.
My tx was 12/25/98. I went in at 235 and came out at 205. Dr said it was all water weight but two weeks later I weighed 170 which was water, fat and other fluids. Since then I have maintained between 160 and 175 thruout all these years. I have never gone over 185 no matter what I have eaten or drank. I have not maintained any type of exercise regeme other than the usual what most people do....ie, walking....no gym or breaking my stones to loose weight or gain muscle. BUT, no matter what/ diet or drugs/ my weight has stayed at this level thruout. I watched in the post/tx program gain lots of weight while on Prednisone but not me. Only side effect for me on that was my mood; I was anxious and angry ALL the time, but returned to a "normal" state of mind when "dc"ing the drugI'm not sure if stopping my rejection (Prograf) meds did anything about my weight but like I said even 12 1/2 yrs out I weight 179 lbs. Good luck to you and remember the poungs are nothing compared to the virus; I'd rather have the weight than the virus any day! Good luck again!!
So, what do you take for rejection if you stopped the Prograf?

Hi Richard,

I have had the same problem with the weight gain. after transplantation. Now two years later I am 75lbs heavier. So I sympathize with u.  If u r on prednisone it will definately do that

Chaneka

Thank you Chaneka, I needed to know if it was just me or if it's common with the stress and all.  I will try to be extra careful with the food. Other than that I am doing well. I have started a Ministry at our Church and that keeps me busy, it was difficult at first getting out of the house, still is at times but my wife and kids help me out alot.

 

I'm a little over a month out from my live liver transplant.  The new liver is doing great!  But I have gained 70 lbs. of fluid in my abdomen and legs and feet.  So uncomfortable and a nuisance.  Did you have or anyone else have this problem.  I'm told it can take 3 months or more for all of this to finally leave my body.

 

sue

If you are on prednisone that may be why, but try and get out and walk as much as you can. My ascites took about 3 months to decrease, then I had alot of extra skin from being 320# and going down to 205#  3 months after the transplant, now I have gone the other way, I'm 260# now,but I started taking thyroid meds., it wasn't producing enough hormones. Hopefully I will find the balance. I know it's there somewhere. I will keep looking forward.

Thank you for sharing your experience.  It does give me hope.  I just felt blindsided by this event but I will press on. 

Thanks again,

RSS

Members

Photos

Loading…
  • Add Photos
  • View All

Latest Activity

Beverly L. Senzee was featured
yesterday
Profile IconBeverly L. Senzee and Keeleigh John joined TransplantCafe.com - The Gift of eLife!
yesterday
Andrea Gaskin replied to Andrea Gaskin's discussion Anyone out there had a Liver Transplant and now need a Kidney due to prograft?
"Hi Clare, I started off taking problably around 9mg 2x a day of prograft and 1000mg of Cellcept 2x a day. It was eventually tapered down to 4mg then in Feb down to 2mg and cellcept to 500mg 2x a day. My dose has fluctuated quite a bit in the last 2…"
Monday
Caring 4 Carrie posted a blog post

Kidney Fact: Diabetics Can Still Enjoy Easter Too! :)

 Easter Can Still Be Sweet For Those With Diabetes. The ultimate goal is to watch your glucose sugar level if you're planning on having chocolates.Here's options for Diabetics on Easter:  1) Sugar free- family fun activities/ exercise 2) Chocolates- major portion control 3) Non food gifts- gift of flowers or plant 4) Sweet Alternatives- Simnel cake or hot cross buSee More
Monday
Caring 4 Carrie posted a status
"This Afeera. She's needing a kidney. Visit her FB page:…"
Monday
Clare mcgee replied to Andrea Gaskin's discussion Anyone out there had a Liver Transplant and now need a Kidney due to prograft?
"Hi Andrea, Unfortunately This is more common than you may think . Not my personal experience granted but have heard & read of this happening. Out of curiosity what were your Prograf levels over the 2 yr period? & doses? As this plays a…"
Sunday
Brian Primack replied to Phil Keyes's discussion Post transplant blues
"Ipad my heart transplant 8 months ago and I also am on 2x 1500mg Cellcept, 12.5 of prednisone and prograf. I don't feel very good either. I keep wondering when I am going to feel better?"
Saturday
Brian Primack liked Donnia's group Prednisone Sucks :)
Saturday
Brian Primack is now a member of TransplantCafe.com - The Gift of eLife!
Saturday
Andrea Gaskin left a comment for Breanna Williams
"Welcome to the Transplant Cafe Family!!!"
Saturday
Andrea Gaskin posted a discussion

Anyone out there had a Liver Transplant and now need a Kidney due to prograft?

I had my liver transplant March 2012 and now last month almost 2 yrs after my liver transplant, I'm in kidnwy failure and on dialysis 3x a week. I am currently being evauated for a kidney transplant at MUSC in Charleston, SC. I hate dialysis! I need my life back!See More
Saturday
Vrinda Nair updated their profile
Apr 18
Sandy Atkinson is now a member of TransplantCafe.com - The Gift of eLife!
Apr 17
Bobbiejo Winfrey commented on Gary Toulouse's blog post Today April 16th
"Congratulations on reaching your fourth year anniversary! I am so glad that you have been blessed with this wonderful gift. May you only have many, many more reasons to celebrate in the future! "
Apr 16
Joy Youster is now a member of TransplantCafe.com - The Gift of eLife!
Apr 16
Gary Toulouse posted a blog post

Today April 16th

Today at 0700, 4 years ago I received the gift of Life.  It would be mid day tomorrow that I would awake and learn that I was breathing on my own.  Inside my chest, two pure young lungs were becoming apart of me and my days ahead.  No longer hooked to a machine to keep me breathing I would soon be standing on my own.  Inside of me I could feel Tammy joining my life energy and I could feel her love.  To everyone have a great day and stay safe.  I still have much to think about.See More
Apr 16

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