Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 Joanie and Bud, It is so good to hear from the two of you. Glad that Bud is ticking along. I am thinking of going from my wheelchair back to the Rollator. I am getting stronger. Wow, the weight loss is great. It does make everything easier. I wish the docs could take me off Flolan and put me on a pill form med like Tracleer. This is a really drastic medication. More or less controls my life. Take care of each other and don't stay away so long. Have you been keeping up.....did you know that Kerry is #2 on the list in Indiana for lung transplant. So exciting. 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 >> Hi et al.!!> Joanie and Bud Kilmon are still going strong. Sorry I have not checked > in for a while. Just wanted to chime in on Tracleer - Bud started it > today!! We have great hopes for it helping his pulmonary > hypertension. He has been on Revatio for about a year now and it > increased his stamina 100%. (He could walk 20' vs. 10') Other changes > since I last corresponded:> 1. Bud loves his liquid oxygen! Helios Marathon has gone to many > restaurants with us. > 2. Bud is on 8 lpm continuous> 3. His Rollator changed his life - walk/sit/walk/sit...we take it > everywhere. Because it is higher than a regular chair, it is so much > easier for him to get in and out of> 4. A friend built a 4" platform for the reclining chair he sits in and > sleeps in so it is soooooo much easier for him to stand up> 5. He has lost 27 lbs. which has helped everything! Major diuretics > brought on the weight loss> > We still enjoy everyday - hope the same for everyone on the board!> Love and light, Joanie and Bud> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 Joanie and Bud....don't want to ignore you....I recognize the names but I'm not familiar w/ your "details".... Glad to hear Bud likes the liquid. I've been on the fence for a couple of months about changing to liquid. Of course I'm apprehensive about the 'freezing' but more so, hate the idea of the pulse making that loud sttttttt, stttttt noise under my nose and people turning to see what's coming....The regulator I have now is absolutely quiet. I hate to give that up. The lighter weight is just about more important than the noise. Stay in touch. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Tracleer Hi et al.!!Joanie and Bud Kilmon are still going strong. Sorry I have not checked in for a while. Just wanted to chime in on Tracleer - Bud started it today!! We have great hopes for it helping his pulmonary hypertension. He has been on Revatio for about a year now and it increased his stamina 100%. (He could walk 20' vs. 10') Other changes since I last corresponded:1. Bud loves his liquid oxygen! Helios Marathon has gone to many restaurants with us. 2. Bud is on 8 lpm continuous3. His Rollator changed his life - walk/sit/walk/sit...we take it everywhere. Because it is higher than a regular chair, it is so much easier for him to get in and out of4. A friend built a 4" platform for the reclining chair he sits in and sleeps in so it is soooooo much easier for him to stand up5. He has lost 27 lbs. which has helped everything! Major diuretics brought on the weight lossWe still enjoy everyday - hope the same for everyone on the board!Love and light, Joanie and Bud Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 Joanie, You made me cry. What a sweet loving thing to do.....washing his feet. Wow! He is one lucky guy to have you taking such good care of him. Thank God for you and for all the caretakers. Angels....all of you! 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 > > >> > > Hi et al.!!> > > Joanie and Bud Kilmon are still going strong. Sorry I have not > checked> > > in for a while. Just wanted to chime in on Tracleer - Bud started > it> > > today!! We have great hopes for it helping his pulmonary> > > hypertension. He has been on Revatio for about a year now and it> > > increased his stamina 100%. (He could walk 20' vs. 10') Other > changes> > > since I last corresponded:> > > 1. Bud loves his liquid oxygen! Helios Marathon has gone to many> > > restaurants with us.> > > 2. Bud is on 8 lpm continuous> > > 3. His Rollator changed his life - walk/sit/walk/sit...we take it> > > everywhere. Because it is higher than a regular chair, it is so > much> > > easier for him to get in and out of> > > 4. A friend built a 4" platform for the reclining chair he sits > in and> > > sleeps in so it is soooooo much easier for him to stand up> > > 5. He has lost 27 lbs. which has helped everything! Major > diuretics> > > brought on the weight loss> > >> > > We still enjoy everyday - hope the same for everyone on the board!> > > Love and light, Joanie and Bud> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 Yes, Joanie, it will be wonderful when Kerry is transplanted. She is just such a special young woman. She is such a good mama. Her babies need her. She is a perfect candidate....in great shape for the shape she is in. I pray for her. I especially hate it when this vicious disease attacks a sweet young mom or dad. It is just heartbreaking. As scary as this is for me at 63, I cannot imagine what they go through....or how. Nice having you back on board. 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> > >> > > Hi et al.!!> > > Joanie and Bud Kilmon are still going strong. Sorry I have not > checked> > > in for a while. Just wanted to chime in on Tracleer - Bud started > it> > > today!! We have great hopes for it helping his pulmonary> > > hypertension. He has been on Revatio for about a year now and it> > > increased his stamina 100%. (He could walk 20' vs. 10') Other > changes> > > since I last corresponded:> > > 1. Bud loves his liquid oxygen! Helios Marathon has gone to many> > > restaurants with us.> > > 2. Bud is on 8 lpm continuous> > > 3. His Rollator changed his life - walk/sit/walk/sit...we take it> > > everywhere. Because it is higher than a regular chair, it is so > much> > > easier for him to get in and out of> > > 4. A friend built a 4" platform for the reclining chair he sits > in and> > > sleeps in so it is soooooo much easier for him to stand up> > > 5. He has lost 27 lbs. which has helped everything! Major > diuretics> > > brought on the weight loss> > >> > > We still enjoy everyday - hope the same for everyone on the board!> > > Love and light, Joanie and Bud> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2008 Report Share Posted May 19, 2008 Can you feel me hugging you, Joyce, because I am! Joanie > > > > > > > > Hi et al.!! > > > > Joanie and Bud Kilmon are still going strong. Sorry I have not > > checked > > > > in for a while. Just wanted to chime in on Tracleer - Bud started > > it > > > > today!! We have great hopes for it helping his pulmonary > > > > hypertension. He has been on Revatio for about a year now and it > > > > increased his stamina 100%. (He could walk 20' vs. 10') Other > > changes > > > > since I last corresponded: > > > > 1. Bud loves his liquid oxygen! Helios Marathon has gone to many > > > > restaurants with us. > > > > 2. Bud is on 8 lpm continuous > > > > 3. His Rollator changed his life - walk/sit/walk/sit...we take it > > > > everywhere. Because it is higher than a regular chair, it is so > > much > > > > easier for him to get in and out of > > > > 4. A friend built a 4 " platform for the reclining chair he sits > > in and > > > > sleeps in so it is soooooo much easier for him to stand up > > > > 5. He has lost 27 lbs. which has helped everything! Major > > diuretics > > > > brought on the weight loss > > > > > > > > We still enjoy everyday - hope the same for everyone on the board! > > > > Love and light, Joanie and Bud > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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