Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Oh, and my tx team are not worried about the autoimmune disease or the anticardio-lipids/antiphospho-lipins. So being listed in the future is a real possibility Ze xx>> > So I've seen the team, and don't really know how I feel.> > At this moment I'm not being listed.> > Despite reassurances from my chest physician, my weight is an issue and> I need to lose 15kg.> > Also I now have pulmonary hypertension.> > There is a chance that if I get my weight sorted and get the PH under> control then I could well be considered too well for tx.> > I'll be seeing a dietician at my gp's and yet another specialist for the> PH.> > > > For - I'm being dealt with in the ANZAC Ward, so named as it's on> the site of a hospital for our antipodean friends in the first world war> []> > I know I've not been about a lot lately, I will be back soon> > Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Zena, It will probably take a while to sort out your feelings. How serious is the ph, did they say? Have they recommmended meds? I'm sorry you're going through this, I hate it for you! Well at least if you can get thing sorted and the PH gets under control it's likely you'll get listed at some point. We're in your corner Zena! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Seen the tx team So I've seen the team, and don't really know how I feel. At this moment I'm not being listed. Despite reassurances from my chest physician, my weight is an issue and I need to lose 15kg. Also I now have pulmonary hypertension. There is a chance that if I get my weight sorted and get the PH under control then I could well be considered too well for tx. I'll be seeing a dietician at my gp's and yet another specialist for the PH. For - I'm being dealt with in the ANZAC Ward, so named as it's on the site of a hospital for our antipodean friends in the first world war I know I've not been about a lot lately, I will be back soon Love Ze xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Zena, That is so strange. That is exactly why they would not accept me as a tx candidate. Oh, and my tx team are not worried about the autoimmune disease or the> anticardio-lipids/antiphospho-lipins. So being listed in the future is> a real possibility Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > >> >> > So I've seen the team, and don't really know how I feel.> >> > At this moment I'm not being listed.> >> > Despite reassurances from my chest physician, my weight is an issue> and> > I need to lose 15kg.> >> > Also I now have pulmonary hypertension.> >> > There is a chance that if I get my weight sorted and get the PH under> > control then I could well be considered too well for tx.> >> > I'll be seeing a dietician at my gp's and yet another specialist for> the> > PH.> >> >> >> > For - I'm being dealt with in the ANZAC Ward, so named as it's on> > the site of a hospital for our antipodean friends in the first world> war> > []> >> > I know I've not been about a lot lately, I will be back soon> >> > Love Ze xx> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Ze, I've been wondering how you were doing...oh how tough for you...you must be so churned up right now! To have PH added to your list is very hard too! Getting your weight & the PH under control could only be a good thing ESPECIALLY if it meant you were TOO WELL for a Tx for a while longer...that gves you MORE time overall. Have they referred to you somebody to HELP with the weight issue....it's all very well to TELL you to lose weight...you need HELP to work around all the reasons why the weight was gained in the first place! I'm sending in some reinfocements for our WArrior Princess right NOW..... THAT should HELP.......A BIT! lots of love n' hugs GIO >> > So I've seen the team, and don't really know how I feel.> > At this moment I'm not being listed.> > Despite reassurances from my chest physician, my weight is an issue and> I need to lose 15kg.> > Also I now have pulmonary hypertension.> > There is a chance that if I get my weight sorted and get the PH under> control then I could well be considered too well for tx.> > I'll be seeing a dietician at my gp's and yet another specialist for the> PH.> > > > For - I'm being dealt with in the ANZAC Ward, so named as it's on> the site of a hospital for our antipodean friends in the first world war> []> > I know I've not been about a lot lately, I will be back soon> > Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Joyce, I thought the DMS and the clotting factor would be an issue, but as far as they are concerned, they are known entities, and while it may mean that they are more careful with my recovery after tx, it isn't a factor with the actual surgery. MB, I don't know the extent of the PH as they picked it up on an echo. All I know is that the ph has turned up since february, so I'm hoping it's not going to be too bad. I'm now waiting to see the specialist for that one. Another bloody hospital , I'm going to be referred to a dietician. I don't know how long that'll take. I'm hoping they'll sit me down and find out my likes and dislikes rather than just handing me a diet sheet. Most of my weight is due to steroids, and I've put on quite a lot in the last year. Apparently if I am truely having difficulties in losing the weight despite trying there are some drugs they can give you to help counteract the weight retention side of the 'roids, but you need to have dieted successfully for a while and then hit an immovable plateau. Now that the PH has been diagnosed, I'm supposed to not put my body under too much stress until I've seen the specialist and am being treated and have his advice for exercise. I'm remaining with the tx team, going to see them every 6 months, so that I stay in the loop, and if and when I get to a stage where I'll need a tx, the process will be quicker for me. The facts and figures about tx are very scary. I'd not been thinking about them as I don't believe in worrying myself unduly, but they were a bit no holds barred yesterday as regards the risks. Today however I'm feeling a bit brighter. Obviously if I can increase my quality of life without tx, that's all for the good. The tx doc is going to look at all my pft's for the last 8 or so years so he can see the trend that my pf is going so he can make a guestimate for my prognosis without tx. I know that's a how long is a peice of string question, but without it how can I make a decision about tx. I haven't been around for a while as I haven't really been in the right place mentally. I think that when I had the tx team meeting looming I wanted to be a bit of an ostrich about things for a while. Information is good, but sometimes I want to pretend that there's nothing wrong. Now that the pressure of tx is off, hopefully I'll relax a bit. Love Ze xx > >> >> > So I've seen the team, and don't really know how I feel.> >> > At this moment I'm not being listed.> >> > Despite reassurances from my chest physician, my weight is an issue> and> > I need to lose 15kg.> >> > Also I now have pulmonary hypertension.> >> > There is a chance that if I get my weight sorted and get the PH under> > control then I could well be considered too well for tx.> >> > I'll be seeing a dietician at my gp's and yet another specialist for> the> > PH.> >> >> >> > For - I'm being dealt with in the ANZAC Ward, so named as it's on> > the site of a hospital for our antipodean friends in the first world> war> > []> >> > I know I've not been about a lot lately, I will be back soon> >> > Love Ze xx> >> > > > > > > > <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb113_Z\> SYYYYYYYYAU & utm_id=7921>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Ze...I'm sorry to hear you now have PH.What a tough hide we need.........I'm anxious to get the results back on my Echo so I can know about myself. Are you disappointed about the wait for transplant or were you maybe not ready anyway? More Drs...gets tiresome doesn't it. Hang on. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Seen the tx team Ze, I've been wondering how you were doing...oh how tough for you...you must be so churned up right now! To have PH added to your list is very hard too! Getting your weight & the PH under control could only be a good thing ESPECIALLY if it meant you were TOO WELL for a Tx for a while longer...that gves you MORE time overall. Have they referred to you somebody to HELP with the weight issue....it's all very well to TELL you to lose weight...you need HELP to work around all the reasons why the weight was gained in the first place! I'm sending in some reinfocements for our WArrior Princess right NOW..... THAT should HELP.......A BIT! lots of love n' hugs GIO >> > So I've seen the team, and don't really know how I feel.> > At this moment I'm not being listed.> > Despite reassurances from my chest physician, my weight is an issue and> I need to lose 15kg.> > Also I now have pulmonary hypertension.> > There is a chance that if I get my weight sorted and get the PH under> control then I could well be considered too well for tx.> > I'll be seeing a dietician at my gp's and yet another specialist for the> PH.> > > > For - I'm being dealt with in the ANZAC Ward, so named as it's on> the site of a hospital for our antipodean friends in the first world war> []> > I know I've not been about a lot lately, I will be back soon> > Love Ze xx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Ze....I'm sure no one to give any diet advice because I am way overweight myself. But I will share a suggestion with you....Two years ago my daughter and I went on the South Beach Diet....and I mean faithfully. I lost 50 pounds. Then was dx with IPF. Everybody needs something that suits them, but go online and this might suit you. Now. After 50 lbs I'm left with skin hanging on my underarms and stomach. Really pretty!!! When I lose more weight, more skin.....Dr. says only surgery will correct the problem. So, bottom line, I'm not really very motivated to lose more weight although I need to. I hope sticking your head in the sand for awhile gave you the respite you needed. I do that too. Just have to isolate myself for a few days. I send you a big warm mama-hug. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Seen the tx team Joyce, I thought the DMS and the clotting factor would be an issue, but as far as they are concerned, they are known entities, and while it may mean that they are more careful with my recovery after tx, it isn't a factor with the actual surgery. MB, I don't know the extent of the PH as they picked it up on an echo. All I know is that the ph has turned up since february, so I'm hoping it's not going to be too bad. I'm now waiting to see the specialist for that one. Another bloody hospital , I'm going to be referred to a dietician. I don't know how long that'll take. I'm hoping they'll sit me down and find out my likes and dislikes rather than just handing me a diet sheet. Most of my weight is due to steroids, and I've put on quite a lot in the last year. Apparently if I am truely having difficulties in losing the weight despite trying there are some drugs they can give you to help counteract the weight retention side of the 'roids, but you need to have dieted successfully for a while and then hit an immovable plateau. Now that the PH has been diagnosed, I'm supposed to not put my body under too much stress until I've seen the specialist and am being treated and have his advice for exercise. I'm remaining with the tx team, going to see them every 6 months, so that I stay in the loop, and if and when I get to a stage where I'll need a tx, the process will be quicker for me. The facts and figures about tx are very scary. I'd not been thinking about them as I don't believe in worrying myself unduly, but they were a bit no holds barred yesterday as regards the risks. Today however I'm feeling a bit brighter. Obviously if I can increase my quality of life without tx, that's all for the good. The tx doc is going to look at all my pft's for the last 8 or so years so he can see the trend that my pf is going so he can make a guestimate for my prognosis without tx. I know that's a how long is a peice of string question, but without it how can I make a decision about tx. I haven't been around for a while as I haven't really been in the right place mentally. I think that when I had the tx team meeting looming I wanted to be a bit of an ostrich about things for a while. Information is good, but sometimes I want to pretend that there's nothing wrong. Now that the pressure of tx is off, hopefully I'll relax a bit. Love Ze xx > >> >> > So I've seen the team, and don't really know how I feel.> >> > At this moment I'm not being listed.> >> > Despite reassurances from my chest physician, my weight is an issue> and> > I need to lose 15kg.> >> > Also I now have pulmonary hypertension.> >> > There is a chance that if I get my weight sorted and get the PH under> > control then I could well be considered too well for tx.> >> > I'll be seeing a dietician at my gp's and yet another specialist for> the> > PH.> >> >> >> > For - I'm being dealt with in the ANZAC Ward, so named as it's on> > the site of a hospital for our antipodean friends in the first world> war> > []> >> > I know I've not been about a lot lately, I will be back soon> >> > Love Ze xx> >> > > > > > > > <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb113_Z\> SYYYYYYYYAU & utm_id=7921>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 Hi Sher, I'm not too disappointed if it means that I can get a bit better without any surgery. Tbh, when I was given the statistics without any sugarcoating that was a bit hair-raising and it feels like a lifted weight now that I don't have to think about it for a while.> >> > > > So I've seen the team, and don't really know how I feel.> > > > At this moment I'm not being listed.> > > > Despite reassurances from my chest physician, my weight is an issue and> > I need to lose 15kg.> > > > Also I now have pulmonary hypertension.> > > > There is a chance that if I get my weight sorted and get the PH under> > control then I could well be considered too well for tx.> > > > I'll be seeing a dietician at my gp's and yet another specialist for the> > PH.> > > > > > > > For - I'm being dealt with in the ANZAC Ward, so named as it's on> > the site of a hospital for our antipodean friends in the first world war> > []> > > > I know I've not been about a lot lately, I will be back soon> > > > Love Ze xx> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 Aw, thanks for the hug. For me, I can be strong about my problems so long as I don't have to be strong all the time. I need to be able to have days where I'm not coping and wallowing in self pity, and I need to have head-in-sand days. I usually find that after giving in to those days I am more able to cope day to day than if I try to be strong all the time. I think the question of a tx was too much for me so I turned into an ostrich rather than having to think about it. Love Ze x> > >> > >> > > So I've seen the team, and don't really know how I feel.> > >> > > At this moment I'm not being listed.> > >> > > Despite reassurances from my chest physician, my weight is an issue> > and> > > I need to lose 15kg.> > >> > > Also I now have pulmonary hypertension.> > >> > > There is a chance that if I get my weight sorted and get the PH under> > > control then I could well be considered too well for tx.> > >> > > I'll be seeing a dietician at my gp's and yet another specialist for> > the> > > PH.> > >> > >> > >> > > For - I'm being dealt with in the ANZAC Ward, so named as it's on> > > the site of a hospital for our antipodean friends in the first world> > war> > > []> > >> > > I know I've not been about a lot lately, I will be back soon> > >> > > Love Ze xx> > >> > > > > > > > > > > > > > > > <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb113_Z\> > SYYYYYYYYAU & utm_id=7921>> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 Zena, First of all, I am glad there are people in other parts of the world who are posting in the middle of our night. I have been awake since 2:30 a.m. I only sleep in 3 or 4 hour increments. Then I am awake. When transplant was first mentioned to me, I mentally flipped out. I sat in the doctor's office listening to him, but my heart was racing. For the first time I realized I was not getting out of this thing alive. I knew it, I just had not digested it. It is like being pregnant and at about the seventh month, you want to change your mind. Not! Tx is an option that you have to consider. But, you don't have to decide today or tomorrow. Let your brain have time to absorb the thought. When and if it is the right decision for you, you will know it. I, too, have stick your head in the sand days and days when I wallow in pity. But, I can tell that you, like me, also use humor to get through the days. Where we are different is age. You have that little girl to raise and that puts us on uneven ground. I have been blessed to have had the years to raise my daughters and see 7 grandkids. I want that for you. I pray for that for you and Kerry and Tina and and Brett....and all the young people warring with this horrid disease. I HATE THIS DISEASE! HATE IT, HATE IT, HATE IT! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > > >> > > >> > > > So I've seen the team, and don't really know how I feel.> > > >> > > > At this moment I'm not being listed.> > > >> > > > Despite reassurances from my chest physician, my weight is an> issue> > > and> > > > I need to lose 15kg.> > > >> > > > Also I now have pulmonary hypertension.> > > >> > > > There is a chance that if I get my weight sorted and get the PH> under> > > > control then I could well be considered too well for tx.> > > >> > > > I'll be seeing a dietician at my gp's and yet another specialist> for> > > the> > > > PH.> > > >> > > >> > > >> > > > For - I'm being dealt with in the ANZAC Ward, so named as> it's on> > > > the site of a hospital for our antipodean friends in the first> world> > > war> > > > []> > > >> > > > I know I've not been about a lot lately, I will be back soon> > > >> > > > Love Ze xx> > > >> > >> > >> > >> > >> > >> > >> > >> > >> <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb113_Z\> \> > > SYYYYYYYYAU & utm_id=7921>> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 Ze...maybe this "downtime" will give you the reflection you need to make a firm decision. I'm such a believer that things happen for a reason. Although for the life of me I can't figure out what the "reason" can be for so many to have this damned disease! Anyway, I'm glad you feel better now. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Seen the tx team Hi Sher, I'm not too disappointed if it means that I can get a bit better without any surgery. Tbh, when I was given the statistics without any sugarcoating that was a bit hair-raising and it feels like a lifted weight now that I don't have to think about it for a while.> >> > > > So I've seen the team, and don't really know how I feel.> > > > At this moment I'm not being listed.> > > > Despite reassurances from my chest physician, my weight is an issue and> > I need to lose 15kg.> > > > Also I now have pulmonary hypertension.> > > > There is a chance that if I get my weight sorted and get the PH under> > control then I could well be considered too well for tx.> > > > I'll be seeing a dietician at my gp's and yet another specialist for the> > PH.> > > > > > > > For - I'm being dealt with in the ANZAC Ward, so named as it's on> > the site of a hospital for our antipodean friends in the first world war> > []> > > > I know I've not been about a lot lately, I will be back soon> > > > Love Ze xx> >> Quote Link to comment Share on other sites More sharing options...
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