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: 1471

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

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
yesterday
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!
Tuesday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"Makes sense to me. Good one David."
Tuesday
Ali Barton and Karen Weddick are now friends
Tuesday
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