Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 zena sorry to hear that. are you sure about not increasing the pred. stopping deterioration sounds like no 1 obective at the minute. i know its a hard one. love may > > > 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 9, 2008 Report Share Posted June 9, 2008 May/Zena She faces that ultimate conundrum. Choice 1-Increase Prednisone with possibility of slowing progression down but with less likelihood of getting weight to where transplant team wants (ignoring others pluses and minuses of prednisone). Choice 2-Don't Increase Prednisone with greater possibility of weight loss although no guarantees of that or transplant but no attempt to slow down progression. Stopping deterioration sounds like an easy given but it isn't. I sit here today knowing there is at least some possibility it would slow my progression but not having chosen that route. Zena: What is KCO? Not being nosy but a bit surprised your diffusion seems so much worth than your breathing itself. Your FEV, FVC, and VA are quite good and your TLCO and KCO very bad. Has any reason for that been given to you? > > > > > > 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 9, 2008 Report Share Posted June 9, 2008 Bruce, I've c & p'd what I can find about KCO. The transfer coefficient is the value of the transfer factor divided by the alveolar volume. This value is an expression of the gas transfer ability per unit volume of lung. The test is performed as described for the transfer factor; in addition the inhaled gas contains 10% helium. Because helium is not absorbed, the dilution of the helium in the exhaled air permits the calculation of the alveolar volume. The normal values for KCO are dependent on age and sex. A fit young adult may have a KCO of approximately 1.75 mmol/min/kPa/litre, an elderly adult may be about 1.25. This parameter is useful in the interpretation of a reduced transfer factor. For example, if the patient has a disease that causes a decrease in lung surface area, or has had a lung removed, then there is a decrease in transfer factor but there is a normal KCO. However, in conditions such as fibrosing alveolitis or emphysema, where there is damage to the lung parenchyma there is a reduction in both transfer factor and transfer coefficient. On a similar note, if a reduction in lung volume is due to an inability to expand the thorax (e.g. weakness) then the TLCO is low but the KCO is normal or increased. However I have no idea why some of my results are good and some are bad! Put it down to stubbornness on my part! My doc sometimes thinks that the reason I'm still upright is purely stubborness! May, What Bruce said! It's trying to get a balance between being able to lose weight and keeping the disease at bay. I'm still yet to see the dietician, I have an appointment for the end of july! Nice to see they've got their fingers out 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 9, 2008 Report Share Posted June 9, 2008 Zena Well, that was a mouthful to digest....but now curious further if you could remind of your diagnosis. Do you have COPD or Asthma as well? > > > > > > > > > > > > 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 9, 2008 Report Share Posted June 9, 2008 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 9, 2008 Report Share Posted June 9, 2008 Nope, as far as my lungs go I have PF (probably nsip, but never had a biopsy) and bronchiataisis, and now PH, but that one's new! I have also got dermatomyositis, anticardio lipin-antiphospho lipid syndrome (or possibly the other way around), raynauds, GERD and various allergies. I think that's it, but I lose track until something I've forgotten about acts up! 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 9, 2008 Report Share Posted June 9, 2008 Hi Ze... Even though you decided not to take Prednisone and I do understand your reasons for not wanting to take it...is your dr OK with it for now? or eventually down the road, he will ask you to take it? For me, I know my docs, would have my head off lol!, if I said I'm not taking the medication. I will have to give a long list of reasons as to why my answer is "NO". All the Best in losing the weight! 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, 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 All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Zena Sorry the itching is so bad. I've been through that. Then I went to an idiot for a dermatologist who stated (1) that he's been prescribing oral steroids for 30 years and never heard anything about steroids causing mood swings and (2) that you couldn't be scratching in your sleep. I then asked him then how would he explain I was fine when I fell asleep but covered with blood including especially my fingers and fingernails when I woke. Fortunately that has eased long ago. > > > > 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 9, 2008 Report Share Posted June 9, 2008 Zena, When I was first diagnosed my doctors felt my only option was a transplant, but they decided to try prednisone in case it stopped the rapid progression I was experiencing. It worked. I hate hate hate the prednisone, hate being chubby , hate the bone loss, moon face, etc.. . BUT I am living a very normal life and enjoying my kids and grandkids tremendously. I still have pajama days on occasion, but prior to the prednisone I was getting out of bed only two or three days a week. This week I spent about 16 hours working on my Masters Degree, hosted a birthday party for my daughter in law ( 26 people), went shopping twice, went to church, and had family over for dinner twice. There is no way I could even begin to do any of that if I wasn't on prednisone. There are many diets that work with prednisone, mainly anything that is low carb, low salt, so you can take it without weight gain. I know this decision is like being between a rock and a hard place and there are no easy answers. Take care- Sarcoid/PF 3/2006 California 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 9, 2008 Report Share Posted June 9, 2008 Ze, my weight gain has been a big issue for me. Not for transplant reasons, just that I had finally reached a decent weight and kept it there when all the nonsense with my lungs started and I was put on high doses of pred and of course became an elephant in a matter of months. I still can't get this damn weight off and I've been off pred for over 2 years. It would help if I could breathe when I exercise but even with the O2 on it's very, very difficult. So, salads are good! And lots of water, and limiting my deserts to only on Sunday. We try to eat a lot of veggies and keep healthy snacks around. So sister, I suffer this problem with you. I have a 30 year high school reunion in late August and will arrive very fat, and with long hair. Not much different than when I was in school! LOL! Guess I'll be easy to recognize! I will be cheering you on Ze, and if you need a boost just give a shout out and I'll try to lighten the day for you. Wish I could lighten ME! LOL! Hugs and prayers! Babs in Texas > > > > > > > > > > > > > > > > > > > > > > > > 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 July 21, 2008 Report Share Posted July 21, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Zena Hoping its your cold, too. And, hoping you quickly get over your cold. I think thats something too that points out to us not to overreact to one test or a few days. I know I've had times with my allergies and congestion and had more trouble breathing but wasn't PF related. Right now, hard to know when I go outside what is and isn't as Dallas in summer takes anyone's breath away with 100+ degrees and level Red air quality. So you get well soon and so show them how to inhale and exhale. > > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Ze, Fingers crossed, prayers said, wishes made. . . get lots of rest, and take care of yourself- Sarcoid/PF 3/2006 California 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Thanks everyone, I'm feeling quite a bit better today, which is a good thing. I want to go camping this weekend, I've organised my O2, I've got plenty, and I think I've organised the weather, (forcast is dry, hot and sunny) I've just got to see how I feel by the end of the week. But I will be mainlining vitC and any other cold remedy that I can think off between now and then. A couple of days of fresh air in a field could be just the thing. Love Ze xx>> Hi Ze,> Having my fingers crossed for you, that everything will be fine on the next PFT.> Take Care> Irene> PF 03/07 Raynaud's Disease 09/07> Crohn'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> > > > __________________________________________________________________> Yahoo! Canada Toolbar: Search from anywhere on the web, and bookmark your favourite sites. Download it now at> http://ca.toolbar.yahoo.com.> Quote Link to comment Share on other sites More sharing options...
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