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I've been fighting a low-key migraine (treated, but stubborn), so my appetite has been weird. I had a tiny portion of pasta with frozen broccoli and cheese sauce, a big bowl of arugula and red cabbage salad, and a big bowl of watermelon.
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Some transplant clinics allow stable patients to discontinue prednisone treatment. I took it for a year after I had my transplant in 2000, then they used me as a guinea pig to see how the new gen medications at the time worked without it. It doesn't work for everyone, but I will be 24 years out in August on only tacrolimus…
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I did 10 sessions with a physical therapist for hypermobility-related arthritis when I was 39, and continued on my own at home with resistance bands. I have since added a pair of dumbbells, 12 lbs each, but they are still very heavy for me. I also have multiple other disabilities, and have had 8 surgeries in my lifetime…
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Do they have an a la carte menu? You could do 2 tacos or something like that instead of a full dinner plate.
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I have a kidney transplant and no gall bladder, so I'm a Carbie girl. I have pierogies for dinner a lot. Pizza is up there, too. It's a hard life. I also make sure to have my salads every day and sufficient fat and protein sources. Surprisingly, I've been skipping dessert lately. I'm in maintenance and I don't count…
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When I'm not as hydrated as I should be, my areas with more scar tissue are itchier. Congrats on losing so much! Maybe it's time to check in with a doctor to see how you are on the inside if you haven't lately.
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I, too, have been diagnosed with everything, but mostly different everythings (genetic kidney stuff that led to transplant, ligamentous arthralgia in so many joints, but they won't give me the hEDS dx, migraines that hit every joint when they flare, the medication side effects to treat these things, etc). I have to…
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Your renal dietitian should be able to help you with resources to track phosphorus against your logging. If you feel itchy for no reason, ask your treatment team for a BMP to check blood levels and renal function.
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Staying hydrated is the #1 thing you can do for kidney health if you're not in failure and don't have a specific diagnosis. I went on dialysis at 19 and have been transplanted for 22 years. If I was in your position, I'd want to find out why multiple infections have travelled up my ureters.
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Hi. I've been chronically ill for over half my life, so this question is meant to be nothing but helpful. If you have had increased symptoms with greater calorie restriction and exercise, why are you willing to enter a rabbit hole of pain to get there faster when you'll need to find something you can manage for the rest of…
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First thing is to always defer to your own medical team and their treatments and recommendations. That aside, my blood pressure is sensitive to stress, salty goodness, and weight fluctuations at relatively lower body weights (as in, my BP starts rising at the high end of my "normal" BMI range. Small things like taking…
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Short answer, yes, you can lose weight just by watching your energy intake (covered in the previous post). Slightly longer answer as a transplant patient, ask for PT sessions and get some strength and balance back if they haven't already set you up with that.
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I have a genetic kidney disease and did the dialysis thing when I was younger. Just celebrated half a lifetime with my kidney transplant this week. What's been easiest for me is to cook things I like a la carte. Pick a meat, 2 lower potassium veggies you love, and and a safe starch like rice or a roll. Watch your portions…
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92 Of course, the truth is 19. Without medical intervention, I would have died of hereditary kidney disease. Did dialysis until I was 21, and just celebrated 20 years with my cadaver kidney transplant. I live a healthy lifestyle because everything hurts when I make unhealthy choices, then I die. The kidney disease is from…
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I can't help with an instructor, but I will give this advice: 1. Learn French if you haven't already. The literal definition of the moves can sometimes help you feel it. 2. Your "feet positions" are actually rotations starting at the hip. Don't force turnout or you can wreck your knees. 3. Start a ballet fund. Many ballet…
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Yes, I have a genetic disease where my body doesn't make a certain collagen found in the kidneys, ears, and eyes, so I understand what it's like to be the unusual patient. It's been over 20 years since my kidneys failed, so it's treatable if caught in time.
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Get her in there ASAP. My first thought about itchiness was high phosphorus from kidney disease. I attributed mine to dry winter air at first.
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I make dinner my largest meal of the day. I also eat dinner around 5 and don't go to bed until after 10, so half my dinner (dessert?) is snacks that I graze on, like raw fruits and veggies, plain yogurt, nuts, and cereals/popcorn (in various combinations). I like grazing, so this works. I also rarely just watch TV in the…
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You'd be surprised the combinations of protein and veggies you can stuff in a taco shell. You and the kids can personalize according to wants and needs. Mostbodies love tacos. I use soft corn tortillas that you can buy cheap in bulk for a couple bucks. Don't be afraid to try unusual combinations like barbecue chicken and…
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Hi. I've had endometrial hyperplasia since I got my kidney transplant 19 years ago (I think it's a side effect of one of the medications, but they haven't actually studied it yet). I've been on progestins ever since. I get the hunger. I've gained weight from eating too much on certain medications, but I've always been able…
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I listen to Rasputina, Peter Murphy, Joy Division, David Bowie, Digable Planets, Depeche Mode, opera, musical theater, and Bjork. If you're bored with your usual music, those are some unexpected choices.
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I have a genetic kidney disease, and I've been through dialysis and have had a transplant for the past 19 years. This is the same advice I would give. Make sure you're hydrated for your next bloodwork if that's an issue for you.
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Hydration is always key. I'm glad it's something easily treatable. My blood is crazy when I'm dehydrated, too, then I have to get extra bloodwork to prove I need treatments for anemia.
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I've seen my endo since this, and I'm waiting on another DEXA scan, too. Any reason she's waiting to do bloodwork? Is she ordering fancier tests than the basic metabolic, PTH levels, and vitamin D? Hopefully, something is just a little out of whack, and supplementing extra D will help. The surgery wasn't bad, but still…
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"Imperfect" at 37 - 26 - 40, but costumers like working with me, sooo...
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Full Fat Greek Yogurt Banana Pineapple Greens with dressing Protein is usually chicken, veggie burger, or eggs Often grape nuts with my banana and yogurt Pumpkin seeds in my salad when I can get to the cheaper grocery store Lately, potato, white or red or gold or sweet
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Eat This...It'll Make You Feel Better by Dom DeLuise
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If you want to get fancy, dress your fruit in lemon and honey (as mentioned above), then hit it with fresh ground black pepper. Pink pepper would probably be amazing, too.
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Plain tea. I like the taste of leaves and twigs.