Transplant Questions

[Hdslimand62]

New to this site.

I have heard there is an average weight gain of 20 pounds after a kidney transplant. Is that true, and if so, do you ever lose it?

Also, what are the common side effects of the medicines after transplant?

[CNeb]

I had my transplant this year, no weight gain. Although I eat a plant based diet and I run almost every other day if I can. Only side effect is I take meds too late, hard for me to get to sleep.

[Hidden in reply to CNeb]

Hola CNeb, conforme mi experiencia como transplantada renal hace 37 años,con la Prednisona al comienzo comes mucho!!!, y obvio, se sube de peso pero, con el tiempo, la dosis baja, y tu cuerpo se nivela y comes lo normal.

Felicitaciones !!! por hacer ejercicio y comer verduras, es muy bueno para tu transplante!!!

La ciencia ha avanzado mucho, talvez no tomas este medicamento.

Que te vaya muy bien!!!! Chicho, Chile

[CNeb in reply to Hidden]

Perdonar cualquier problema de traducción, ya que utilicé Google Translate. Solo estoy en una pequeña dosis de Prograf y Cellcept. No ha habido necesidad de Prednisone.

¡Gracias! Mi objetivo después del trasplante era volver a correr. Un mes y una semana después de mi trasplante corrí dos millas. Antes de mi trasplante, me basé en plantas con la esperanza de que me mantuviera fuera de diálisis y así fue. A pesar de que no tengo restricciones de dieta, el beneficio de ir a la planta fue demasiado grande para mí como para cambiar. Además, quiero proteger el regalo que me dieron.

¡Te deseo lo mejor!

[Hidden in reply to CNeb]

Hola CNeb, gracias por tu respuesta!!!! yo tambien tomo Cell-Cept 250 mg, Rapamicina y Prednisona, en baja dosis. Tu te libras de la Prednisona, felicitaciones!!!

Que estes muy bien!!!! Chicho, Chile

[kidney40]

I do not remember about side effects, however I remember about three months after

my transplant, I painted window sills at sunrise for 2 hours then ate breakfast, plus

eating a breakfast before painting. Gained a lot of weight and if I remember correctly

never lost the weight, however weight stabilized cause I cut back to one breakfast

a day. You may eat a little to much at the beginning cause it feels so good to be

able to et what one wants for a meal. Attempt to limit the amount you can eat cause

at will take awhile to get active again once you get home from transplant surgery.

kidney40

[Kidney05love]

I gained a significant amount of weight after my transplant as I was on many different anti rejection medications . Along with already having a slow metabolism it does not help.

[blackkat2]

Yep, it happened to me. I'm 7 months out from my kidney transplant. Have gained 15 lbs that I cannot get rid of (yet?). Have tried calorie restriction, increased exercise duration and intensity (I do resistance training and HIIT five days/week; started again 2 months after transplant), low carb, etc. Major issues with hormones (thyroid, insulin, melatonin), hoping an endocrinologist can provide some answers.

My side effects of meds have been, in addition to weight gain, diabetes, myoclonus (at night), poor sleep, mood swings, hair loss. Not sure which of these will gradually dissipate and which are permanent (and no one can tell me). It definitely takes some getting used to and you will feel kind of like you're going crazy sometimes, but it's better than the alternative!

[Drdetroit]

6&1/2 yrs after transplant, 40 lbs, weight gain. after taking lasix 20mg daily for a month, I lost 20lbs. I never took insulin until after transplant.I take prograf, cellcept prednesone ,bactrim & blood pressure meds. Side effects are weight gain, confusion & memory problems. I also have some balance problems, which might be from blood pressure meds. Still better than the alternative. Good luck to you.

[nsil]

Hey there! I had my transplant almost two years ago. I was so happy to finally feel some real appetite, but I really made an effort to try and not gain too much weight. A side effect of the high doses of cortisone was high cholesterol, so my diet was restricted to very low fat foods. I believe for everyone gaining weight is very different, so the best thing to do is to consult with a nutritionist who has had some experience with transplant patients. regarding side effects, you might notice a lot of differences in your body, like losing hair or a certain puffiness in your face, this is normal and for me it went away relatively quickly. I found by having this experience that you should never hesitate to ask questions to your doctors, no matter how trivial, and that bodies often react differently, so you really need to learn how to listen to your ‘new’ body.

Hope all goes well!! Good luck!!

[WYOAnne NKF Ambassador]

The first thing you have to remember is that everyone is different. Most all the side effects of the meds for me were resolved after the first year post transplant. I think you should not worry about it because you may not have the same issues that others have had. I think just about everyone gains a little weight after transplantation. First everything tastes so good and you don't have all of the food restrictions you did pre-transplant. And then it's the steroids (prednisone) you take. I think if you are on a regular exercise program, even walking 3-5 times a week it helps.

Just don't worry! You will feel so good and have an incredible GIFT of a new kidney. Good luck.

I am living well at almost 19 years post transplant!

[Rhettly in reply to WYOAnne]

Curious how hold were you when you got your transplant? I’m 72 and considering a transplant, but very concerned about this

[WYOAnne NKF Ambassador in reply to Rhettly]

I was 49 years old when I had my transplant. I am 68 now and living well!

[Rhettly in reply to WYOAnne]

Congrats on your great success with transplant. Ive only been on Peritoneal dialysis for 1 year and may have a relative for my kidney donor, just went to Cleveland Clinic in FL this week and its pretty scary what all the post drugs can do to you. I want to be able to not be hooked up to a machine every night, but really worried about the outcome of my looks, mood and sleepless nights with the meds. Thanks for your help.

[WYOAnne NKF Ambassador in reply to Rhettly]

Don't worry about the post transplant meds. I did have some issues the first 6 months. But it's during that time that your body is adjusting and the transplant team is getting you on the right dose for you. It's not one dose fits all. They were able to lower my dose. After several years they were able to stop my steroids (prednisone). It was during that time that the team realized that I needed to take the name brand of my immunosuppressants rather than generic. That was great for me & did away with a lot of the side effects. Now, as well as post transplant, that is why it is so important to report to your doctor any side effects or problems that you are experiencing.

Life is so worth a few sleepless nights and mood swings till you adjust to the meds. Now it is second nature to take my immunosuppressants twice a day and have no problems with them.

8 months post transplant I was hiking the 'Highline Trail" in Glacier National Park!

[Rhettly in reply to WYOAnne]

Thanks for all your information, I greatly appreciate it. Am I understanding correctly that you can’t be in the sun any more because of the meds? I am so happy you have had such a good experience!

[WYOAnne NKF Ambassador in reply to Rhettly]

Yes, it is. You have a higher risk of developing skin cancer. But when going out in the sun even now, you should wear sun screen.. We have done trips to the Caribbean and Mexico and out in the sun a lot using lots of sun screen. At least in my case I have had no issues. Following a transplant you are suppose to see a dermatologist every year to get thoroughly checked for anything suspicious.

[Rhettly in reply to WYOAnne]

Thanks I use sun screen as we spend 4 months in Florida in the windy, we are snow birds from Vermont and I love sitting and walking the beach, I need to be in sun, thanks again

[WYOAnne NKF Ambassador in reply to Rhettly]

Best of luck! I am here if you have other questions!

[Rhettly in reply to WYOAnne]

Thanks

[Dotti55]

Hi!! I was so full of water after my transplant and it took me several months to lose it...at least 3o lbs of just water, everything from my neck to my feet were swollen so I couldn’t get any shoe on. Took water pills twice a day, still taking. Haven’t had much in the way of side effects, except I have noticed some memory problems for which I’m going to talk over with my doctor. Also Pred can definitely put weight on. To try to lose the rest of weight I need to lose, I’ve been walking daily to burn it off, and a year later I’m beginning to feel normal again. Good luck!!

[kidney40]

Replied yesterday, August 31st

Kidney40

[ColoJim]

I’m 15 months post. Haven’t gained much weight, but I’m pretty active. Main side effects from drugs:

Tacrolimis causes tremors for me. A time release tac has helped reduce tremors.

Mycophenolic acid (Myfortic) causes explosive loose stools for me. Especially when exercising. Imodium a couple times per week helps. My Nephrologist is working on ways to reduce this problem.

Good luck with your transplant.

[JNGIA]

Two years post transplant. Check with your nutritionist on weight gain. My doctor referred me to a book “Coping with Prednisone” which has some good suggestions esp if you’re on a high dose. Other than that, the side effects, as mentioned by other folks here, will vary depending on dosages etc. All the best to you.

[danielleblock in reply to JNGIA]

"Coping with Prednisone" saved my life when I was age 16 on 40 mg of pred. I was on it to get ulcerative colitis under control. Trying to mentally prepare myself, and my husband, for another battle with prednisone when it comes time for transplant.

Can't recommend the book enough!

[booka89]

I am 2 month’s post transplant and so far no weight gain. I was terrified when I found out I’d be on prednisone bc I was on it when I was a teen and gained a ton of weight. The dose they start you out on is mild and it continually tapers down. I have noticed some “moon face” effect from the prednisone but my weight has remaineded fairly stable (Thank you Jesus).

My suggestion is be wary of constant snacking and the types of food you eat. I’ve had low phosphorus and low magnesium labs since my transplant and the doctors are emphasizing that I eat food rich in both. I try and focus on the healthier foods like spinach, yogurt, bananas, and nuts.. instead of dark sodas and ice cream lol. Though I have enjoyed the dark chocolate for magnesium!

Talk to your nutritionist and find out what works for you. Everyone is different so don’t worry if your journey is different from others. Focus on your body and how you can be the best advocate for yourself. Don’t be afraid to eat and start out slow if you exercising. The hardest part for me is to not overdue b/c I definitely feel worse the next week as my body tries to recover.

[PeterPetrinec]

it would be good to talk also about salt.. you must take care of salt the same as you did on dialysis.. because prednisone is causing fluid retention.. which can be fairly amount of weight..

[Universalmatchs]

I am going on 3 years on my second kidney transplant. For me I immediately felt better! I had a working body! But then the meds started dun dun dun... first steroids yes they do great things but I went from 150 to 210! Within the year! I would of ate my right arm if it was an option! Then my hair began falling out in chunks. So I had to go get a shorti hair cut. Then the mood swings started in highs lows lows high. Crying feelings of guilt and just being overwhelmined with all the follow up. I kept trying to tell my transplant team but all they were concerned about was if my kidney was function and if it was good then then bye see you next week fat baldie bitch! Now three years later I took it upon myself to get myself back started taking biotin for hair growth. Started see a counselor. And as the steroids weened out of my system I put nothing but healthy food back into my body and as quick as it came on....it’s gone and more 140! If you can prepare ahead of time for any of those it will make many of your days and nights easier! So you can fully enjoy the gif you just received!

[JeffSherman1958]

Do not let the fear of possible side effects slow you down or deter you. Everyone has some reaction - weak, strong, vague, specific, multiple, singular. You will too. Everyone will also tell you, I believe, that it’s worth the cost to have the transplant. I’m just shy of 20 years and lucky to have had minimal side effects until lately as my graft declines after all these years of work. No matter. I’d do it again and when I need to, sooner or later, I will again, side effects be damned. I think everyone will pretty much agree. Good luck!!!