Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Maybe we can be diet buddies! I should be having a 1-to-1 with a physio. I'm not eligable for pulmo-rehab here as I am already more active than they try to get you to, so my doc is asking for a physio to see me and go over what excercise I can safely do, and how I can safely increase my exercise levels. I've had to break out my 'fat' wardrobe this summer. I refuse to buy new clothes in this size(a US size 18 I think) as I feel that I will then be accepting this size, and I refuse to do that. So I'm wearing some very strange combinations at the moment. The other day it was a gypsy style skirt with a pyjama top that didn't look overly pyjama-y I missed our last school reunion as I was in hospital having Lili! Not that I was bothered tbh, I didn't get on with that many people at school and those that I did I'm still in touch with. Love Ze xx> > > > > > > > >> > > > > > > > >> > > > > > > > > I saw my chest physician today, my results are FEV1-67%,> > > > > FVC-90%,> > > > > > > > > FEV1/FVC-78%, TLCO-23%, VA-82%, KCO-31%, these are> > slightly> > > > down> > > > > > on> > > > > > > > last> > > > > > > > > month. Ideally my doc would like to increase my pred for a> > > > while> > > > > > to> > > > > > > > > slow the progression down, but as my weight isn't shifting> > > > > that's> > > > > > > not> > > > > > > > > likely to happen.> > > > > > > > >> > > > > > > > > Oh well, back again next month if I'm not in having my> > heart> > > > > cath> > > > > > > [8-> > > > > > > > |]> > > > > > > > >> > > > > > > > > Sunlight has been bringing me out in uticaria, but she's> > going> > > > > to> > > > > > > put> > > > > > > > > off me seeing a dermatologist for a while as I'm seeing so> > > > many> > > > > at> > > > > > > the> > > > > > > > > moment.> > > > > > > > >> > > > > > > > > Love Ze xx> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Oh, and I was thinking about my anomolistic results. I don't have the characteristic crackle in my lungs either, well very little. I wonder if that's connected? Love Ze xx> > > >> > > > Zena,> > > > Your pft's are very interesting....some areas that one would> expect> > to> > > be terrible in someone with our disease in your case are close to> > normal> > > and others....well that's why the doc would like to do the pred. Oh> > > trying to get to a balance between slowing the disease down and> > allowing> > > us to control our weight. It's a dilemma.> > > > Sorry your having the uticaria too.... do you have alot of itching> > > with it? Hope not!!> > > >> > > > Beth> > > > Age 48 Fibrotic NSIP 06/06> > > >> > > > Change everything. Love and Forgive> > > >> > > >> > > >> > > >> > > >> > > > My latest PFT's> > > >> > > >> > > > I saw my chest physician today, my results are FEV1-67%, FVC-90%,> > > FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on> > > last month. Ideally my doc would like to increase my pred for a> while> > > to slow the progression down, but as my weight isn't shifting that's> > not> > > likely to happen.> > > > Oh well, back again next month if I'm not in having my heart cath> > > > Sunlight has been bringing me out in uticaria, but she's going to> > put> > > off me seeing a dermatologist for a while as I'm seeing so many at> the> > > moment.> > > > Love Ze xx> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Zena, My "crackle" disappeared at my last visit also. My doc just shrugged when I asked where it had gone. He told me not to complain, that if my lungs don't sound like a bowl of rice crispies (snap, crackle, pop) that's a good thing. I go back to Duke on Wednesday for my 3 month PFT and visit with the pulmo so hopefully the crackle won't make a return appearance! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive My latest PFT's> > > >> > > >> > > > I saw my chest physician today, my results are FEV1-67%, FVC-90%,> > > FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on> > > last month. Ideally my doc would like to increase my pred for a> while> > > to slow the progression down, but as my weight isn't shifting that's> > not> > > likely to happen.> > > > Oh well, back again next month if I'm not in having my heart cath> > > > Sunlight has been bringing me out in uticaria, but she's going to> > put> > > off me seeing a dermatologist for a while as I'm seeing so many at> the> > > moment.> > > > Love Ze xx> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Thanks Ze! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive My latest PFT's> > > > >> > > > >> > > > > I saw my chest physician today, my results are FEV1-67%, FVC-90%,> > > > FEV1/FVC-78% , TLCO-23%, VA-82%, KCO-31%, these are slightly down on> > > > last month. Ideally my doc would like to increase my pred for a> > while> > > > to slow the progression down, but as my weight isn't shifting that's> > > not> > > > likely to happen.> > > > > Oh well, back again next month if I'm not in having my heart cath> > > > > Sunlight has been bringing me out in uticaria, but she's going to> > > put> > > > off me seeing a dermatologist for a while as I'm seeing so many at> > the> > > > moment.> > > > > Love Ze xx> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Hi Ze, Having my fingers crossed for you, that everything will be fine on the next PFT. Take Care IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 My latest PFT's I saw my chest physician today and had my lung functions. They are currently not good, they're down quite a bit on 6 weeks ago, BUT I currently have a cold, so my doc has given me 2 week course of antibiotics, doxycyclene or something, and I've got to go back in a fortnight and re-do the tests. If it's not the cold then we're going to have to reassess my meds. So fingers crossed it's the cold Love Ze xx Now with a new friend-happy design! Try the new Yahoo! Canada Messenger Quote Link to comment Share on other sites More sharing options...
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