Jump to content
SCLERO.ORG
Sclero Forums

jeannie mcc

Members
  • Content Count

    111
  • Joined

  • Last visited

Everything posted by jeannie mcc

  1. Hey LeAnn! Thanks to the invite to the Pity Party! I'll bring the chips and dips. We're strong-minded people and I think "will" features a lot more than "won't" or "can't". That determination is going to stand us in good stead, I think. Yes, Ma'am, we will make it! JJ
  2. Wow, what a great response! Thanks a million, everyone. I'll ask my rheumatologist about B-12 and iron. I know that I have been anemic in the past so it is definitely worth checking. I'll follow the recommendation to take naps as needed! :rolleyes: I haven't been diagnosed all that long either and I'm with you, Fictionite - it really bugs me sometimes that I can't do-do-do and go-go-go right now, today and everyday. C'mon Body, let's have some consistency here, says the Mind! Nuh uh, says the Body, I rule and you must obey.... Thanks again, everyone. Have a great weekend and
  3. Hi Kamlesh, I had a full fundoplication done laproscopically last year. I only stayed one night in the hospital (my choice because I felt so great). When I got home I only needed to take 2 x 1/2 Percocets because the pain was so minimal. I was able to eat things like yogurt (no fruit bits tho'!) right away and by the time 2 weeks had gone by I could comfortably do everything but meat and bread - they needed another week. I haven't had any of the problems they told me might occur and I can eat anything, lie flat, bend over to tie my shoes, you name it. NO reflux! The operation w
  4. Hi everybody, I've recently been hit with my first experience of something that goes far beyond just being tired. It's been going on pretty constantly for about 6-8 weeks, with just the odd good day. Any ideas on how long this sort thing is supposed to last and what you can do to make it a bit easier to cope with or hasten it out the door? My doctors have pretty much decided it isn't medication related. JJ
  5. Hi Tangie, There are small chests used for transporting medications that must be kept cold that run off 12V and/or batteries, but a regular cooler with ice packs could still work. Make sure they are solid, sealed commercial ones, not frozen water. You'd need to have a letter describing the medication, how it has to be kept and who it is for from your husband's doctor/pharmacist. Always contact the airline in advance and make arrangements for special needs treatment (I recommend getting a rep from the airline to meet you at check-in with a wheelchair even if you don't need it.).
  6. Hi Omaeva, My fingers still have the pads, but I've lost the ones from my feet. Sometimes it feels like I'm walking directly on bone. I now chose my shoes by the amount of cushioning the soles give, then add a sheepskin liner for a bit more softness under foot. They seem to call this 'pulp loss' and I've done a Google search looking for cause, but didn't have any luck either. Curious~ JJ
  7. Hey Y'all! Looks like the glasses are everyone's view as the way to go (pun intended)! Now all I have to do is chose a frame. Auughh! Decisions, decisions. We're really fortunate that our insurance will pay towards new glasses once a year, so if I hold off till this fall, it won't be so $$$. Thanks for the input. Shelly, you've given me a couple of ideas for bags for me too. JJ
  8. Hi Celia, It doesn't necessarily guarantee you have either or both, just that you may. And if you do, it sounds like you would be at a very early stage, which is exactly when you'd want to catch it. As it happens I do have both, but the confirming diagnosis was only made when a chest CT showed the ILD and the bubble echo, regular echo, and then 'gold standard' - a right heart cath. - confirmed pulmonary hypertension. The big important gotta-remember thing is that both of these complications are not always progressive and even if they are (over a long time, hopefully), treatments
  9. Biotene for me too! There's also a spray called Stopper 4 which you can carry with you easily for the quick spritz when you get really dry.
  10. Hi all! Since it looks the O2 is going to be a forever thing, I was wondering if anyone had any experience with either the glasses that have the O2 tubing built in or the trans-tracheal delivery method. The standard tubing-across-the face isn't working out very well for me. Any comments would be welcome! JJ
  11. Hi! My hands cramp off and on during the day but it seems to be related to over-use and maybe some tendonitis developing, rather than the Raynaud's. If I'm really faithful about doing the hand PT, it seems to help all the hand issues. Sometimes I'll fill the kitchen sink full of nice warm water and do the exercises under water. Huh, why is it that I don't mind that but hate doing the dishes? I could be multi-tasking! The legs get heavy when I'm 'low on O2'. I was on 15mg Norvasc, but I had so much peripheral edema from it (pushing each leg's weight up to, ummm, maybe a ton?), that
  12. 'Just because' is a good enough reason to do nearly anything. Hang in there, Jackie! Hope tomorrow is a better day too.
  13. I've got altitude attitude too. Last time I was at sea level, I felt like a new(er) woman! I'm going to look for an oximeter too. Thanks for all the helpful experience-based advice. I need to use the forum more!
  14. Thanks, everyone! The info does help. I thought continuous would probably need to be lower than demand, but I hadn't thought about the 50' hose weakening the pressure at the delivery end. That would make a difference, especially when I'm upstairs. I've been tending to have the settings wherever they make me feel comfortable, but I recently read a couple of articles about too much O2 damaging the lungs, long-term. Of course they don't suggest how much is too much and there is also the counter argument that the benefits out-weigh the risks for us. :blink: I've been wondering about getting
  15. Hi everyone! Can anyone tell me a rough guide to settings when changing from a pulsed 'demand' type portable O2 to running off a 50' hose and cannula connected to a stationary liquid O2 reervoir? I'm finding using the portable around the house tiring (it's carried off either a shoulder strap or waist belt) and kinda chilly too. ;) My doctor says 2-3 LPM on the portable, but what's that convert to on the stationary? I'm supposed to be using O2 at night too, but my hubby doesn't like cuddling up to the portable any more than I do and the dog just hates it when I shove it out of bed onto h
  16. The sildenafil would be prescribed to treat the pulmonary hypertension~
  17. Has anybody had any vision problems (other than dry eyes)? I have systemic scleroderma sine scleroderma (no hard skin) which for me has meant ILD, pulmonary hypertension and GI problems. I've only had the diagnosis for a year. The PH doctor wants me to try sildenafil, but I am concerned about reports of vision problems with this drug, especially since I have some macular problems. I'd really like to hear from anyone who has any vision problems that they think is due either to sclero and/or drugs used to treat PH. <_<
  18. Hi Everybody, Does anyone know what the 'official' position on organ/tissue donation is for scleroderma patients? I know that for people who lived in UK during a certain period of time or for any length of time, they can't give blood or tissue (Mad Cow Disease concerns), but apparently organs are OK because they are 'life-saving'. JJ-Knitter B)
  19. Hi Jen and Janey, My doctors recently started me on CellCept. I have no skin thickening (lots of teleangiectasias), but both PH and ILD - "mild" in both cases. My last PFT's showed a substantial decline in FVC's down to the 50%'s. It was my impression from both the rheumatologist and pulmonologist that CellCept has the least toxicity and they had chosen it because it's level of aggression corelated with the level of progression; as in they didn't need to bring out the big guns, just get ahead of things and not have to try and play catch-up later. No need to risk a medication that could
  20. Hi all, I've got this coming up. What should I expect from it? Other people's experiences with it would be helpful. JJ-Knitter
  21. Thanks everybody, that was what I was looking for! JJ
  22. Hi Margaret and all, No, the WHO classes are descriptions of functional limitations placed on a patient by a disease. I finally found a good article on Medscape by Dr. Michael A. Mathier by doing a web search on "PAH functional class". It seems that the World Health Organization's classes are expanded descriptions of the New York Heart Association's functional classification system. There are 4 classes and all must have PAH: class I has no limitation of activity (no symptoms) and from there on up there is shortness of breath, fatigue, chest pain and/or faintness or dizziness with l
  23. Hi Peanut, WHO classes are World Health Organization Classes (Classification) of severity of PH. I think they are functional based, as in if you are Class I you have no physical limitations and each number higher indicates a worsening. What I don't know and would like to find out is what each level is. Can't seem to find much about it and apparently each class has it's own set of commonly used medications and is (I think) predictive of prognosis. The medical jargon and terminology can really drive you nuts. JJ
  24. I keep hearing about WHO classes, as in WHO Class III/IV patients are suitable candidates for certain type of treatments. I've seen this especially with reference to pulmonary hypertension. What are the various classes and does anyone know where I can find out more about them? Thanks, as always. JJ-Knitter
  25. This is going to sound like a daft one :P , but do patients with the sine scleroderma form of systemic scleroderma ever develope the characteristic skin thickening of other forms of SSc? I've got a patch near each cheekbone and I'm getting concerned about shrinking mouth and stiffening hands. ;) I'm most concerned about the hands as you could probably guess by my nom de plume. JJ-Knitter (oh yeah!) :D
×
×
  • Create New...