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: 1610

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

David Goodman commented on Lili Feldman's group The Funny Bone
"I've sure gotten old! I've had two bypass surgeries, a hip replacement, new knees, fought prostate cancer and diabetes I'm half blind, can't hear anything quieter than a jet engine, take 40 different medications that make me…"
yesterday
Charlene Sellers posted a status
"Thanks for the WELCOME ... I am exploring the site ..."
yesterday
Profile IconCharlene Sellers and Shankargouda Patil joined TransplantCafe.com - The Gift of eLife!
Wednesday
Terri Warren and Suzanne Giacherio are now friends
Wednesday
Prem Dayal replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"Hope you take the same road for the health and live a long healthy life"
Tuesday
Prem Dayal replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"I had my transplant in September 2010 as well, I do live on a controlled life, and Now I have started enjoying it as well. I made a point to myself to stay happy and strong and somehoe that's really affected my health as well. It has just gone…"
Tuesday
Suzanne Giacherio posted a status
"My liver turned 5 y/o on 2/11/15! Grateful to be alive and to have my wonderful husband. He has been with me every step of the way."
Tuesday
Suzanne Giacherio replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"Good for you! Be very careful with that new liver you have received as it will serve your body well. I was transplanted in 2010 and doing rather well but in a much more slower pace than ever before. Continue to celebrate life just take it easy on…"
Tuesday
Prem Dayal replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"Hey, I'm doing great. I did go ahead with the limited amount of consumption twice in January. Both times it was a good whiskey (Blue Label) and till now nothing bad has shown up."
Tuesday
Suzanne Giacherio replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"How are you doing now? I know this forum can be sketchy on being current - but here it is a little over a year later and there are no new comments from you Prem."
Tuesday
Profile IconBrittany Offutt and Vince Abron joined TransplantCafe.com - The Gift of eLife!
Tuesday
Charles Pruitt updated their profile
Tuesday
Jennifer Harris-Roush joined Terri Lynne's group
Thumbnail

Relationships and Dating

Having a transplant, or waiting for one can affect a relationship and if you're single, makes dating interesting. Here is a place to share your stories, questions and anything else about these topics.
Monday
Misty Mountain and Mohamed Rouibah are now friends
Monday
Misty Mountain posted a discussion

Anyone experience acute rejection past the 1 year mark with double lung transplant?

My dad had a double lung transplant 1.5 years ago after suffering with bronchiolitis obliterans organizing pneumonia and pulmonary hypertension for over 7 years. Last week he was submitted to the hospital for acute rejection. His doctor told us that they only see this in 1% of patients. I'm wondering if anyone here has experienced this or knows of someone who has and what the outcomes were? Right now my dad's biggest fear is that there will be permanent damage to his lungs and he will be back on oxygen permanently. I honestly think he fears that more than dying. As you can imagine this is devastating to him and my family. On top of the emotional devastation comes the heavy burden of financial stress. For a shameless plug: if you are able to, please donate to help pay for his medical expenses and/or share the below link with your network.We are truly grateful for any help, support or prayers that you can offer for my family.Thank you!…See More
Monday
Misty Mountain posted a blog post

Acute rejection 1.5 years after double lung transplant

https://www.tilt.com/campaigns/the-mountain-familyMy dad had a double lung transplant 1.5 years ago after suffering with bronchiolitis obliterans organizing pneumonia and pulmonary hypertension for over 7 years. Last week he was submitted to the hospital for acute rejection. As you can imagine this is devastating to him and my family.On top of the emotional devastation comes the heavy burden of financial stress. If you are able to, please donate to help pay for his medical expenses and/or share the below link with your…See More
Monday

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…

© 2015   Created by TransplantCafe.com.

Badges  |  Report an Issue  |  Terms of Service