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General

Weight Post Transplant

ShelbycreatesExpert
Transplant Patient
August 17, 2022 in General

Hi friends. Last November I got to my heaviest weight in my adult life (even pregnant!) It wasn't super overweight, but I was quite uncomfortable and my doctors were noticing. I've been losing weight since then and am about 5 lbs from my goal weight. I'm curious how your weight has been affected by the transplant and what has helped you to stay at a healthy weight for long term. I'd love to hear your stories, as I'm in the middle of my own. Thanks!

1 - 30 of 43 Replies

  • DebTransplant Patient

    Shelbycreates, I am fighting the weight gain myself. I’m slowing climbing up snd up snd I really do not eat much at all. I’ve lost my taste for lord of foods I used to enjoy. My doctor tells me it’s the tacrolimus and it’s common. He’s working on a plan for me and I’m now taking a very low dose with good results. Sounds like you’ve done wonderful with your weight loss.

    August 17, 2022
  • Brenda2022Transplant Patient

    My weight is climbing too. Had DLT 3/27/22. Have gained 20 pounds.

    August 17, 2022
  • MelsammTransplant Patient

    Hi,

    I gained weight after my first year LT to. Started a exercise/walking routine and I am down to my lowest weight in a long time, also they lowered my tacro to. I hope it does not interfere w/my liver and I get good results to. Will see next month.

    Also wanted to ask LT are you taking another med beside your tacro and how often do you go for labs after 2yr. LT.

    August 17, 2022
  • ShelbycreatesExpert
    Transplant Patient

    Yes! I feel like it can be challenging knowing if the weight is affected by medication or not. I think mine was very emotional, as we moved away from a tight-knit family support system and it was still very much COVID for our family when everyone else in our community was done with it. I was homeschooling our 4 kids and trying to figure out my new normal in a different state. Thank heavens, I've found some things that help!

    August 17, 2022
  • ShelbycreatesExpert
    Transplant Patient

    I feel like that first year is such a roller coaster. I was quite thin starting out and then lost weight from complications with the surgery. Then a few months later, I had CMV, and then 6 months after that had a parasite from a pool. All of those incidents landed me in the hospital and I was so grateful when I got better and felt like eating again! I feel like things begin to calm down after the first year. You're getting close!

    August 17, 2022
  • ShelbycreatesExpert
    Transplant Patient

    Keep us posted on how the tacro and your liver are doing. I'm 4 years post kidney transplant, but I take envarsus (time released tacrolimus) and 5mg prednisone. I get labs done on an as-needed basis (they often need to recheck my tacro levels so it's usually monthly), but not more than 6 months--although they told me yearly by this point before my transplant.

    August 17, 2022
  • AliEm14Expert
    Transplant Patient

    I actually lost a ton of weight post transplant. Pre-transplant I was significantly overweight just due to the meds needed to keep me alive, and when I had a functioning liver again post transplant it all just kind of fell off (like almost 100 pound weight fluctuation). I did experience a bit of weight gain on prednisone (I was on it for 6 or so months right after transplant) but at that time it wasn't alarming to me, since I still weighed less than I did pre-transplant. I can only tell from looking back on old photos where I had the classic moon face.

    I struggle with severe disordered eating so an emphasis on the weight was never something I wanted. I eat what I can when I can. I use a lot of smoothies and shakes to make sure I'm getting adequate nutritional intake, and my entire team knows my history and to not bring up numbers or my weight in conversation.I just try to pay attention to how I'm feeling and when I'm feeling the best in my body.

    August 17, 2022
  • ShelbycreatesExpert
    Transplant Patient

    I love this so much! Paying attention to how I'm feeling in my body has helped me so much towards this goal. I'm sorry you've had such struggles with eating. That is so very difficult.

    It sounds like you've been able to find a calm, soothing way that works for you. I think that learning about my nervous system and ways to calm myself has been so helpful in this journey. I'm eating things I couldn't tolerate before and I think it's because I'm learning to regulate my nervous system better.😊

    August 17, 2022
  • KristeTransplant Patient

    I am almost 9 months post transplant and I started gaining weight in June and I am up 15 lbs I was underweight and now I am almost overweight.

    August 17, 2022
  • MelsammTransplant Patient

    Hi,

    You are probably on a cocktail of meds. right now I bet! I was told when I gained it was from the meds. so it might get better when they start tapering off some of your meds and you can get more active. It helped me.

    congrats on 9 months😊

    August 17, 2022
  • ShelbycreatesExpert
    Transplant Patient
  • AmberortizTransplant Patient

    I have gained 25-30 lbs. I never had any issues with my weight prior to my liver transplant. Post transplant, I lost weight with some complications. Once I started gaining, it seemed like it wouldn't stop. For a while, I was only on Tac and then I had a mild rejection episode at the beginning of the year. They added prednisone. At my last appointment, I asked about weaning the prednisone. He told me we could start but only after adding mycophenolate. So, I am done to 5 mg of prednisone and currently on 3mg of Tac and 1000mg of mycophenolate. It feels so strange to me to be struggling with my weight.

    August 23, 2022
  • MelsammTransplant Patient

    Hi, how far out r u in your LT. I was gaining to but have been able to loose 20lbs w/a lot of excising.

    very frustrating b/c of the meds for sure.

    August 23, 2022
  • AmberortizTransplant Patient

    I am 20 months from mine. The only time I've been this heavy, I was pregnant. Its definitely frustrating.

    August 23, 2022
  • MelsammTransplant Patient

    I am about the same. What kind of mild rejection did u have. Just curious b/c I have not had any problems. I am on tacro and my fortis to, low dose tacro due to kidney issues. This is my first month on this dose. I know that the prednisone can cause weight issues to. I feel so blessed, no Covid either.

    August 24, 2022
  • ShelbycreatesExpert
    Transplant Patient

    It's strange what happens with our bodies, especially after so much stress. I also lost a lot of weight at the beginning after my surgery. Then I went through the stress of moving away from close family members and losing my support group and having to start over again in a new state while homeschooling my 4 kids. I didn't realize how much I had turned to food to numb some of the pain. It's fascinating how with some simple shifts in habits I've been able to get to a healthier weight for me.

    August 24, 2022
  • A_RayTransplant Patient

    If you want to lose weight, you need to cut out the carbs. Not a radical keto diet, but at least mostly a keto diet. There are bajillion resources for eating keto - just Google it. Plus, get a little exercise...brisk walking is enough...at least 30 minutes. And, hydrate, hydrate, hydrate. Always be drinking water...just keep a bottle of water by your side.

    August 24, 2022
  • AliEm14Expert
    Transplant Patient

    I tried keto for a while and it never worked well for me. I think every body needs such different things, and the idea of following a "diet" can be so harmful for some people, like it was for me. Definitely trying to eat clean helps. One of my dieticians said it's about having a balance between "fun" foods and nourishing foods. Cutting out fun foods only leads to deprivation, which can be harmful for mind and body. If you have a weight loss goal, maximizing those nutrient foods is the way to long lasting, sustainable change

    August 24, 2022
  • AliEm14Expert
    Transplant Patient

    prednisone was a beast for me for weight gain. I just hit 2 years (seems to be a few of us on a similar timeline). I don't remember if cellcept made a huge difference in terms of my weight fluctuating or not - I was only on it the first year, which was when my body was still trying to recover and we were adjusting things constantly anyway. I'm only on tac now, which I'm insanely greatful for, and my worst side effects from that are tremors and cognitive/mood instability

    August 24, 2022
  • MelsammTransplant Patient

    How much tacro do u take! I saw want to get to the least amounts of the immunosuppressants.

    I NEVER was taking any meds unless they were natural. When I first had cirrhosis I started milk thistle and to this day I think it helped but Docs did not agree.

    is any one taking preventive vitamins. I just started a probiotic.

    August 24, 2022
  • AliEm14Expert
    Transplant Patient

    Tac doses seem to be super different for everyone in terms of individual needs. I'm also not in the US, and I've found that matters a ton when factoring in what immunosuppression people are on. I was also in my early twenties when I had my transplant, and was transplanted for a metabolic/genetic condition, which apparently makes a difference.

    I'm on 5mg of tac once a day. I also take a bunch of supplements/vitamins... I'm lucky that my team is pretty open to a blend of western and alternative medicines/treatments.

    August 24, 2022
  • AmberortizTransplant Patient

    I also take vitamins and supplements and mix allopathic medicine and alternative medicine. I already ate super clean and did a lot of alternative medicine pre transplant. Now, I feel like I'm learning to navigate things differently due the meds. I love hearing that other people are doing a mix of things. My doctor isn't supportive of anything natural that I do. I have some issues with my diet now. They have gotten on to me about my potassium being too high, so I'm trying to find a good balance for me.

    August 24, 2022
  • MelsammTransplant Patient

    yes, my docs are the same. Every time I call to see if I can take something they tell me NO!

    so I am frustrated about that. I am scared to take anything b/c I do not want to mess w/my liver or w/the meds we have to take the rest of our lives.

    What type of diet are you on. I have changed my completely also.

    August 24, 2022
  • AmberortizTransplant Patient

    My liver enzymes were slightly elevated about the time I was due a biopsy. They just called and told me there were mild rejection cells present and put me on steroids. I started on 20mg of prednisone and I'm down to 5mg. I had a few complications the transplant. A vein running from the liver to my heart healed too narrow and I ended up with a stent and they told me they caused me to get osteoporosis due to not supplementing vitamin d & calcium in the beginning and the drug can deplete those. Because of the osteoporosis, I ended up with 7 compression fractures and I didn't heal properly. About 4 and half months after the transplant, they told me there was too much scarring in my liver and they put me back on the list. However, the scarring has reversed quite a bit and they just removed me from the list. I did get covid, but it was super mild like a cold for me. That's great that you haven't had any problems.

    August 24, 2022
  • AmberortizTransplant Patient

    I work with a clinical nutritionist and a functional medicine dr. I research contraindications with everything that I take. Because of the stent I had put in, I'm on blood thinners also. I have more issues with supplements being contraindicated with those than the anti-rejection meds. I mostly eat whole foods, organic fruits and vegetables and pasture raised and grass fed meat. I only eat sugar on rare occasions and I stay away from processed foods for the most part. I've noticed that I don't have much of an appetite on the mycophenolate though. I also do mind body work and I find that to really help with the stress, depression and anxiety I was feeling after everything. My mindset is so much better.

    August 24, 2022
  • MelsammTransplant Patient

    I am basically eating the same way, so much better post LT for sure. I exercise and spend most of my time outdoors, it really brings me peace and I love to garden”mainly flowers they bring me happiness” I am kind of a loner w/just a few good friends.

    i would like to find someone like u have found.

    how much mycophenolate are u taking. I am on 1080.mg seems like so much to me. I am just having to take 81mg asa.

    August 24, 2022
  • MelsammTransplant Patient

    when u say due for biopsy when u have a LT do u have to have biopsies done. I have never had to have one.

    I had cirrhosis/NASH w/portal hypertension. and the worse was the hepatic encephalopathy.

    thank you so much for your input. My biggest fear is rejection always in the back of my mind.

    August 24, 2022
  • AmberortizTransplant Patient

    They told me I was due a year post op. I don't know that was just because I had so much damage after the transplant. I had Autoimmune Hepatitis with cirrhosis prior to the transplant. From my understanding, rejection is usually treatable with meds. My doctor wasn't too concerned. He put me on steroids immediately and my enzymes were back in range within a week. I know this may sound weird to some, but my energy healer has me find stillness and talk to my liver and form a loving relationship between myself and my new liver.

    August 24, 2022
  • AmberortizTransplant Patient

    That sounds awesome! I spend some time out side walking every evening, but I need it cool down where I live to be outside as much as I would like. I am currently taking 1000mg of mycophenolate. My doctor put me on it to wean me off the steroids. Since my issue was autoimmune, he's super cautious about changes to my meds. Prior to my rejection episode, I only took 4mg of Tac. He said once I'm completely off prednisone, we'll see about lowering the mycophenolate to 500mg. I want to keep my liver happy on the least amount of these meds as possible. I am kind of a loner too. I'm pretty introverted. I hope you find someone that you can work with that you are comfortable with.

    August 24, 2022
  • MelsammTransplant Patient

    Omgosh my donor family contacted me and told me about him”Andy” I talked with him all the time. So no I do not find that weird I was afraid to say anything b/c people would think I am crazy. Again thank you for sharing your journey.

    August 24, 2022
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