Hi all , I had a lung transplant 5 years ago and have been on dual anti rejection meds of prednisolone and cyclosporin.
I'm on 8mg of steroids daily I also have gastropharesis. I have put 3 stone on in 3 years and my consultant has told me I am to lose weight as its putting pressure on my only one lung I have . But I am so very struggling to lose weight ! I have tried everything and I only manage to eat one meal a day so I'm really at a loss. I'm limited on how much physical exercise I can do as I get extremely breathless and very tired. Please help ! Any suggestions welcome.
Hi, are you in the uk Ejbid? If so perhaps you could give the BLF helpline a call this week - 03000 030555 uk office hours. I wish I could offer some advice....there was a post yesterday from someone very breathless & needing to loose weight, perhaps there's something tgere that will help. I can only suggest cutting out all sugars for starters, exercise from the chair. There's a contraption on Amazon, it's a set of pedals you place in front of your chair & gently pedal, might help....wishing you all the best in your quest. Peege
We sound like identical twins. I had my transplant three years ago this summer. How much Predisone are you on? By five years post you should be on something like 5mg? I see you don't take Cellcept? Did you switch from Prograf to Cyclosporine and was it due to a bad reaction?
Many, many people struggle with weight gain after transplant. But usually with the reduction of steroids over time it gets better. Eating one meal a day is definitely not the answer. You do need to eat three square healthy meals with portion control. I don't need to tell you about eating healthy as the transplant team is always going on about it. 😅 Exercise is tricky when you feel breathless. But the problem is without it we lose elasticity in our lungs and it just gets harder and harder to move with weight gain.
I also only have one lung that is really working, my donated lung. It is really such a good sport and is keeping me alive. May I ask what your FEV 1 is at the moment?
I think the first step to getting more mobile is to get up and walking more because there really is no short cut to weight loss. The bottom line is to burn more calories than we eat . You might be breathless but that is not necessarily a bad thing. The more fit you get , the better it should be. Do you have any other issues with your kidneys, diabetes or your liver? It depends also on how your donated lung is doing. Cut down on carbs and avoid sweets. It is really the only way to lose the weight.
I'm so sorry for all my questions. It's just that I don't encounter many transplantees here on BLF. I am a member of a lung transplant group. Do you have any support from people who have been through this?
Great advice from Cas.trouble with only eating 1meal,yr body doesnt know whn yr going to eat,going so long without food,body goes into " starvation" mode,so it doesn't burn it off.Eating three times a day,should stimulate body to burn more off
Ive always been on cyclosporin ever since transplant, my fev1 is currently at 39% .
I have ckd but no issues with liver.
But I do have an very high heart rate on exercise.
I'm not on any other platforms so don't speak to any one that's had a transplant t and I seem to feel like I'm the only onegoing thrugh it if that makes sense !
You are very young to be living with one lung and I can see from your FEV1 it must be quite difficult for you. Am I correct in thinking you had one lung removed but have not had a lung transplant? Have they ever mentioned giving you a donor lung in replacement of the one you don't have? I am curious. You are not alone my friend. Definitely not alone. xx ❤️
P.S. Sorry I got really confused. I confused your post with someone else's. So sorry. So please ignore my silly other post. Prograf makes my brain fuzzy. 😑
There is a programme that is run by some nhs areas to help with this, my nhs dietitian got me on it due to the high dose pred for years and weight gain of 6 stone. The programme is called counterweight plus and for the first 3 months you only have what they provide , obviously they are selective about people for it as normally for diabetics type 2 wanting to reverse, but they did it for me due to having an active job and changing diet but still unable to lose weight. See if your doctor can refer you to a dietitian and if there may be a possibility in your area of this programme, you can now do it on your own and pay for it, but you definately need support to do it and stick to it. Hopefully this is something that you may be able to do
I lost 4 stone most of it while being on pred by following a calorie controlled diet. You can get apps to help with this. They’re not fashionable anymore. A lot of people on the PMR/GCA thread are on long term pred and follow a low carb diet. Head over there if you fancy that as they are really helpful. I couldn’t do it as I like carbs too much and need the energy. Good luck.
Oh ok I understood your situation Ejbid. You can reduce sodium intake. Minimize canned and processed foods, soy sauce, cold cuts, chips, and other salty snacks, because high-sodium foods contribute to water retention. This will helps to lose some weight from your body.
I sympathize wholeheartedly as I have been on steroids for 17 years and have put on several stone in weight.I don't have anything to add to the excellent replies above except to wish you well and hope you find some strategies that work and help with weight loss x
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