Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About rmm

  • Rank
  1. :o Wow, thank you sooo much guys for the input. I really feel so much better hearing other patients and family's perspectives. I might email the thread to my sister so she can print it out and show it to my mum - who is still a bit afraid of the Internets, sadly. Maybe one day I'll coax her in here. This illness, more than any other one I've read, is truly a day by day thing - one day you have a setback, next day you're full steam ahead. Bizarre, eh? My mum is slowly but surely getting her appetite back - I think once she's in rehab she'll feel far more motivated, since she'll be doing more exercise so that even *she* will feel like eating - that's what happened last year. Also the food at the rehab hospital was quite nice, and they had a cafeteria where you could go and get snacks too, which was handy - we'd just take her down there and offer her something as an option. Like I don't need to tell anyone here, it's so hard to eat healthy and eat a low-salt diet - all the stuff that will get us fat is not the stuff she likes to eat much anyway. Also her anti-depressant is FINALLY kicking in - it's really random when it starts to work, especially if you don't weigh much and your metabolism is out, etc. We've also told them to keep her on it no matter what - that it's just as important as any other medication to make sure she eats. The doctors are doing a calorie count (?) to make sure she's getting what she can, and I think the threat of the Nose Feeding Tube worked.. hehe. My mum was a nurse, and apparently there's also some White Coat Syndrome going on as well - i.e. if family ask her to do something, she might not - but if a doctor tells her, she'll do it ASAP. ;) Razz, thank you for the baking fiasco line - that was definitely my morning smile :D Good luck with the baking - I like it myself but always know it means a big risk of Flour on the Floor, even if there's not flour in the recipe :D And Judy, my mum LOVES the honey cruellers. Not exactly nutrition central, but tasty and good in moderation :) Thanks so much everyone... appreciate the support. Hugs to all.
  2. Hi there folks, Ok, so my mum (whom I posted about in another thread) is still in the hospital, but is slowly getting better from the problem that sent her there (i.e. inflamed liver and hepatitis probably due to too much of her pain medication). She'll need rehab to get her strength back and hopefully to get her exercising. She has a slew of medical issues (the usual lovely suite of scleroderma and CREST symptoms - renal failure, skin issues, pulmonary hypertension, GI issues, etc.). I wanted to get some advice on trying to encourage someone to eat even when they don't feel like it - any tips or tricks? I'm especially looking for people who have scleroderma so I can try and help understand without being a Food Nag. Right now the big issue is that she's lost weight being in the hospital (since last week of February) because she felt awful and didn't feel up to eating - and while everyone complains about the quality of the food, it didn't look too bad to me. :) She's also been depressed (understandably) and they had to stop the antidepressant she's on when she had issues with her liver. They've started it back up, and it should take another week before it's kicked in, which might help her appetite. I know there are issues with her dry mouth (possibly swallowing as well), stomach pains, heartburn, as well as that feeling of satiation (i.e. she doesn't want or 'need' to eat much, and isn't hungry much) and that the satiation is a combo of the scleroderma as well as kidney disease. But we're really worried, and doctors have said that she might need a feeding tube if we can't seem to get her to eat. She's incredibly tired on top of everything too - so eating dinner 'feels' like an effort :( It's not that she's on a hunger strike per se - she just doesn't seem hungry, and we've tried everything to encourage her but have had no such luck. She's on a low salt, low potassium diet; while there's some stuff she has to avoid (like bananas, sadly) there's still piles of stuff she's able to eat. All she's really been craving is milkshakes - those Vanilla Bean Lattes with Whipped Cream from her favorite coffee shop, which is all she wants to eat. :( I know she doesn't want to go on a liquid diet, and a feeding tube is distressing for everyone involved, but I don't know what to do. We've talked to the doctors and they're aware of our concerns, and when she gets discharged to rehab we'll have a nutritionist too. I was reading about how when people are told by loved ones to quit smoking (or quit any bad habit), that people tend to block out the judgmental/harsh talk after a while; I don't know if that's what's happening when we're all begging her to eat something. It's like she's not being rational about this; I don't expect her to eat lots of her hospital food (i.e. if she eats the mashed potatoes and skips the meat, I'd understand) but she's just lost interest, and won't even have the Boost Nutritional Supplements they provide for every meal. Does anyone have any ideas? Sorry for the length. :( Regards, Rachel
  3. Hi folks, I don't post here often - I think I had another user name, but I can't remember it, so I can't remember if I've filled in any information. Anyway, my mum has diffuse sclero with some serious organ issues - you name it, she's got it (pulmonary hypertension, kidney issues being treated via dialysis, usual skin and circulation issues, plus now in hospital for viral hepatitis for the past couple of weeks). We've been living with this monster for so long, it all goes into a blur what she's been on and when; she's on the usual cocktail of meds (various ACE inhibitors, Viagra, etc. etc.). She's gotten excellent care over the years from all the various specialists she's seen, but I'm kind of disappointed that no one's been her medical advocate as far as actual treatment - they treat the symptoms but I'm wondering all along if they could have been more aggressive in helping her. :( I wanted to find out more about the various stem cell trials - I'm reading up on it and I'm suspecting she might not be a good candidate for any of them since she's in her 70s, but am curious as to their current success rate, and how long it will take to go from clinical trial status to actual treatment, and if there's anything that can be done for her. Last summer she survived almost 3 months in hospital (including 2 weeks in ICU) battling pneumonia - she's a fighter, and I just want some kind of hope that something more can be done to help her. :( Any ideas?
  • Create New...