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Staying Motivated for the Long Haul

Healthy Living | Last Active: Jan 29, 2023 | Replies (499)

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@contentandwell

@lcamino I am not on steroids except for a tiny dose of prednisone but my immunosuppressants were changed last week and I am now taking one that had been discontinued. I have gained @ a pound a day since the change. I did not notice this when I was first on this medication (tacrolimus) after my transplant but then I was still so filled with fluid that I probably just did not notice, and as the fluid went down my weight probably was going up. I have been eating very healthy, keeping my calories down, and getting plenty of exercise. Has anyone else experienced weight gain from tacrolimus? I am really upset about this but hoping that as my body adjusts this trend will stop.
JK

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Replies to "@lcamino I am not on steroids except for a tiny dose of prednisone but my immunosuppressants..."

@contentandwell - What does your transplant team say about this? Is it a common side effect to the med? Is this the med you had to switch to since the other was impacting the health of your kidneys? Sorry - I have more questions than answers.

@lcamino They switched me from tacrolimus to sirolimus because the tac was effecting my kidneys. Now they are gradually switching me temporarily back to the tac because sirolimus tends to hinder healing and they do not want it to effect my TKR. They will be very watchful of my numbers as always. I still be having weekly lab work done here, analyzed by the main lab in MA and handled "stat" so the results are there in the afternoon. They actually have my blood sent to MA by a courier immediately!
JK

@2011panc, @lcamino, @contentandwell - I am enjoying reading your comments about the meds! ...I am allowed to say that because, I am right there with you! The funny (not ha ha funny) thing is that almost every transplant patient that I talk to has shared the same concerns and questions. I love being able to share with all of you dear friends:-)
I try to seek comfort in the fact that my labs have been good, and that I feel good, and mostly that my organs are "happy". (that is an actual term used by one of my transplant team docs)
Group hug!
Rosemary

@rosemarya , @elcameno , @contentandwell and anyone else I may have missed. Thank you for your responses and encouragement. I have been really struggling with my mood this last month because of increased pain, frustration and weight gain. I have eaten potatoes, bread, chocolate, fast food, second servings and drank more calories than usual. I feel disgust for giving in and giving up -- temporarily. I am also frustrated that I have not worked as hard on my rehab and my leg strength is not improving as fast as I want. I am impatiently waiting for notice of approval for low back spinal fusion. Arthritis has overgrown my vertebrae to that my nerves are constantly pinched. The pain is extreme. Nothing helps and is has set off a number of migraines. For right now I am just breathing, no panting, through and trying not to be too unpleasant. I really do not like feeling this way. Thank you all for your caring and supportive words. I hope to have good news to share very soon and hope you are all doing well.

@2011panc - I'm so sorry to hear you are having more health issues. From what I understand low back pain is excruciating. I do admire your willingness to "confess" because I think when we slip and make mistakes and try to hide it the problem only seems to get worse (at least that is my experience). I just finished watching a very good webinar from Mayo that @rosemarya shared with me back in August and perhaps it will give you some ideas, and a glimmer of hope. I was unsuccessful in getting the link here (computer skills are weak) but it is called "Weight Loss: 5 Behavioral Strategies" so hopefully using the search engine will help you find it in the Mayo Clinic Connect material.

I have learned that if you do not exercise you can still lose weight. Obviously exercise and eating right is the best combination for your overall health but it sounds like exercise is not an option for you at the moment. Having said that, are you able to do any water aerobics?

Jenny Craig is probably not the cheapest option but I am learning a lot about healthy portions and actually putting my knowledge into action. When I ever feel a tad hungry I just tell myself that once I reach my goal weight I can eat more to maintain my weight whereas now I'm on a 1200 calorie diet to lose weight. I also try to remind myself how fortunate I am to have an excess of food when so many in the world don't have enough, and I remind myself that my transplant will be more successful if I lose as much weight as possible. These are just two things that help motivate me not to cheat (although I have learned to have small cheats with no loss - like 10 extra grapes or half a forkful of my daughter's birthday cake). It is also easier to stick to the plan because I'm seeing drastic results and the sooner I reach my goal weight the sooner I can increase my calorie intake (I don't know what that will be yet but I know it will be more than 1200 calories). As far as hunger, the pangs are minimal and short lived because I eat three meals a day and 3 snacks so when I feel hungry it is usually time to eat.

I just went grocery shopping yesterday because you do supplement with fruits and vegetable and I can't believe how different my shopping is. I buy soooo many more vegetables than before (and less fruit, which I miss) and I actually eat them all before they go bad! Mayo Clinic has a diet, Weight Watchers is quite affordable, and Jenny Craig has a deal to lose 20lbs for $20 (PLUS food), but what I learned from the webinar is to find what works for you and stick with it.

Thanks for sharing because I guarantee you are not the only one struggling with the need to lose weight and the inability to exercise simultaneously. It takes courage to share as you did. Please keep us informed with how you are doing - ups and downs. I don't want you to feel like you are in this alone.

@2011panc It sounds as if right now you are doing the best you can. Don't berate yourself. I know, that's easier said than done, at least it is with me. I myself go on "binges" sometimes eating more than I should or things I should not be eating.

No one would like feeling that way. I hope you do get a spinal fusion if that's what you need. My brother-in-law had one last week on two vertabrae. He was in the hospital for two days and is now recovering at home. Back pain really is a miserable thing to have to deal with.

I didn't realize that something like that could bring on migranes. I was a terrible migraine sufferer until menopause. Thank God those are over, they were horrible, lasting three to four days.

It really sounds as if you have your hands full with your health problems so again, just do the best you can.
JK

@lcamino and @2011panc Great ideas, Lynn. Although I have very successfully lost weight, as you know Lynn, I fall of the wagon off and on so getting encouragement as in your post really helps. I did gain and I just cannot seem to lose. As I have mentioned before, I owe my success to myfitnesspal and exercising. myfitnesspal really keeps me accountable. My son said to me last summer, when I was cheating a bit, to remember that the pleasure is short lived but getting the weight off is never easy. I was really, really heavy so he is very proud of me. It's like he has a whole different mother, going to a club to exercise (mostly water exercise, I hate the gym) and not too badly overweight anymore. I will always have a heavy image of myself, I think you never lose that if you have been very heavy.

Someone a short time ago mentioned BMR which at the time I was not familiar with at all but then I googled it and you can calculate your BMR. You input your age, height, activity level, and weight. It will tell you how many calories you can eat a day if you want to maintain that weight. MINE WAS ONLY 1100 if I am not active, so I exercise so I can eat more than that. I used to kid that every day that I did not go to my club and get exercise I gained a pound. Now I understand why that was true. I envy my son's girlfriend, she's 5'10" so she can probably eat a lot, and my son says she does. 😉

The other helpful aids I use are a fitness tracker to tell me how much exercise I have gotten each day, and my scale.
@techi Lisa, try myfitnesspal. I find it a huge help. I have lost weight in stages, it's a daily battle. I have lost a total of 85 pounds at this point. It was 90 but I gained five back. I did that in stages.
Good luck to all of you, and I hope I manage to lose those five pounds, but it is difficult. Lynn, I am very impressed with Jenny Craig from what you say. Maybe I should try that for a little while. I want to lose those five pounds and perhaps three more.

By the way, @techi, I presume you were involved with computers? What did/do you do? I was in IT for a long time, prior to having children. After taking 20 years off too much had changed to resume that career.
JK

@contentandwell - I totally agree that you need to exercise (we all do) but especially because they say no one should eat under a 1200 calorie diet. Even when that 1200 calorie diet is planned by a dietician they say you still can't get all the nutrients you need so you should take a multivitamin. I just read up on BMR and it is my understanding that your BMR is the amount of calories your body needs to stay alive but you certainly need more if you are going to be active, exercise, cook, house clean etc. My knowledge is minimal so maybe a consult with a professional would help you come up with the correct calorie count for your goal, lifestyle, activity level etc.

@JustinMcClanahan - Yes it is. Thanks for finding it.