Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 You are an inspiration. Renting the RV sounds like the perfect way to make the trip and getting to see both your families, PF and children. It's the reminders from those like you that let me know while the disease really sucks, we can all still make the most of life possible under our circumstances. > > I was recently told that I am in the Class IV; which is the reason that I would faint so much. As long as I sit and do absolutely nothig, not even talk, then I would be comfortable, but even trying to get up would cause me to so short of breath that I would faint. We bought a lift chair which works very good for getting out of the chair. (Although I always worry that it is going to catapult me across the room). But...since I have had my transtrach procedure, I have only fainted twice. Once when I picked up my little dog and the other time, I was picking something up from the floor. I took Trakleer for almost a year and then was unable to take it any longer and the doctor switched me to Revatio. I dont know if it helps or not but I take it regularly. Insurance has agreed to pay for it for one year only. Alot of people have asked me about my transtrach and if I would do it again. Well.....that is a hard question for me. I have had infections since the surgery. Cleared up the one on the inside and then I get one on the outside of my neck. Cleared it up and wham..here it is again. But as far as the trach itself is concerned. Most of the time I do not even realize it is in my neck. It is like having pierced ears. You notice it at first and then not again. I love the silence, the calm feeling and not having sore noses, ears or nose bleeds. It takes approx. 5 min. to clean it in the morning and before bed. I used to be squeamish about it but not anymore. Apria is supposed to deliver the supplies but so far they havent but I was given quite a bit so I am not out yet. The negative sides of it for me....I have not gone down on my oxygen usage. Still require 10L. I am still hoping it will happen but even if it doesnt, I can tolerate 10L and more this way. Thank all of you who emailed me and asked me about it. I was negligent in replying, gues I was messing with Apria so much. We have rented an RV to drive to San (only 15 hours from Phoenix), will be glad to meet everyone and then of course, will get to see my children since they live in Dallas and Weatherford. > Am anxious to meet Kathy as she is coming to my town next week. > Thanks again everyone and I hope to see you soon. > L > NIPF02 PH 06 Transtrach 06 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 , I'm still coming to your town! But it isn't until February 20, just under 3 weeks from now! Don't forget to send me your phone #. You will be the first group member I've met, but that will soon change since I already have tix and reservations for San and will get to see you there, too! Be well! Kathie WA NSIP 96, PAH '03, Bronchiectasis '05 > > I was recently told that I am in the Class IV; which is the reason that I would faint so much. As long as I sit and do absolutely nothig, not even talk, then I would be comfortable, but even trying to get up would cause me to so short of breath that I would faint. We bought a lift chair which works very good for getting out of the chair. (Although I always worry that it is going to catapult me across the room). But...since I have had my transtrach procedure, I have only fainted twice. Once when I picked up my little dog and the other time, I was picking something up from the floor. I took Trakleer for almost a year and then was unable to take it any longer and the doctor switched me to Revatio. I dont know if it helps or not but I take it regularly. Insurance has agreed to pay for it for one year only. Alot of people have asked me about my transtrach and if I would do it again. Well.....that is a hard question for me. I have had infections since the surgery. Cleared up the one on the inside and then I get one on the outside of my neck. Cleared it up and wham..here it is again. But as far as the trach itself is concerned. Most of the time I do not even realize it is in my neck. It is like having pierced ears. You notice it at first and then not again. I love the silence, the calm feeling and not having sore noses, ears or nose bleeds. It takes approx. 5 min. to clean it in the morning and before bed. I used to be squeamish about it but not anymore. Apria is supposed to deliver the supplies but so far they havent but I was given quite a bit so I am not out yet. The negative sides of it for me....I have not gone down on my oxygen usage. Still require 10L. I am still hoping it will happen but even if it doesnt, I can tolerate 10L and more this way. Thank all of you who emailed me and asked me about it. I was negligent in replying, gues I was messing with Apria so much. We have rented an RV to drive to San (only 15 hours from Phoenix), will be glad to meet everyone and then of course, will get to see my children since they live in Dallas and Weatherford. > Am anxious to meet Kathy as she is coming to my town next week. > Thanks again everyone and I hope to see you soon. > L > NIPF02 PH 06 Transtrach 06 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 It is not even one mile from your families home to mine. Yeah. Re: Pulmonary Hypertnsion ,I'm still coming to your town! But it isn't until February 20, just under 3 weeks from now! Don't forget to send me your phone #. You will be the first group member I've met, but that will soon change since I already have tix and reservations for San and will get to see you there, too! Be well!Kathie WA NSIP 96, PAH '03, Bronchiectasis '05>> I was recently told that I am in the Class IV; which is the reason that I would faint so much. As long as I sit and do absolutely nothig, not even talk, then I would be comfortable, but even trying to get up would cause me to so short of breath that I would faint. We bought a lift chair which works very good for getting out of the chair. (Although I always worry that it is going to catapult me across the room). But...since I have had my transtrach procedure, I have only fainted twice. Once when I picked up my little dog and the other time, I was picking something up from the floor. I took Trakleer for almost a year and then was unable to take it any longer and the doctor switched me to Revatio. I dont know if it helps or not but I take it regularly. Insurance has agreed to pay for it for one year only. Alot of people have asked me about my transtrach and if I would do it again. Well.....that is a hard question for me. I have had infections since the surgery. Cleared up the one on the inside and then I get one on the outside of my neck. Cleared it up and wham..here it is again. But as far as the trach itself is concerned. Most of the time I do not even realize it is in my neck. It is like having pierced ears. You notice it at first and then not again. I love the silence, the calm feeling and not having sore noses, ears or nose bleeds. It takes approx. 5 min. to clean it in the morning and before bed. I used to be squeamish about it but not anymore. Apria is supposed to deliver the supplies but so far they havent but I was given quite a bit so I am not out yet. The negative sides of it for me....I have not gone down on my oxygen usage. Still require 10L. I am still hoping it will happen but even if it doesnt, I can tolerate 10L and more this way. Thank all of you who emailed me and asked me about it. I was negligent in replying, gues I was messing with Apria so much. We have rented an RV to drive to San (only 15 hours from Phoenix), will be glad to meet everyone and then of course, will get to see my children since they live in Dallas and Weatherford.> Am anxious to meet Kathy as she is coming to my town next week.> Thanks again everyone and I hope to see you soon.> L> NIPF02 PH 06 Transtrach 06> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 Can't wait! Can't Wait! Can't Wait! Kathie > > > > I was recently told that I am in the Class IV; which is the reason > that I would faint so much. As long as I sit and do absolutely > nothig, not even talk, then I would be comfortable, but even trying > to get up would cause me to so short of breath that I would faint. > We bought a lift chair which works very good for getting out of the > chair. (Although I always worry that it is going to catapult me > across the room). But...since I have had my transtrach procedure, I > have only fainted twice. Once when I picked up my little dog and the > other time, I was picking something up from the floor. I took > Trakleer for almost a year and then was unable to take it any longer > and the doctor switched me to Revatio. I dont know if it helps or > not but I take it regularly. Insurance has agreed to pay for it for > one year only. Alot of people have asked me about my transtrach and > if I would do it again. Well.....that is a hard question for me. I > have had infections since the surgery. Cleared up the one on the > inside and then I get one on the outside of my neck. Cleared it up > and wham..here it is again. But as far as the trach itself is > concerned. Most of the time I do not even realize it is in my neck. > It is like having pierced ears. You notice it at first and then not > again. I love the silence, the calm feeling and not having sore > noses, ears or nose bleeds. It takes approx. 5 min. to clean it in > the morning and before bed. I used to be squeamish about it but not > anymore. Apria is supposed to deliver the supplies but so far they > havent but I was given quite a bit so I am not out yet. The negative > sides of it for me....I have not gone down on my oxygen usage. Still > require 10L. I am still hoping it will happen but even if it doesnt, > I can tolerate 10L and more this way. Thank all of you who emailed > me and asked me about it. I was negligent in replying, gues I was > messing with Apria so much. We have rented an RV to drive to San > (only 15 hours from Phoenix), will be glad to meet everyone > and then of course, will get to see my children since they live in > Dallas and Weatherford. > > Am anxious to meet Kathy as she is coming to my town next week. > > Thanks again everyone and I hope to see you soon. > > L > > NIPF02 PH 06 Transtrach 06 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2008 Report Share Posted February 1, 2008 I gave you my husbands number at work. ours is . They are too close in number I think. Anyway, dont lose it. See you soon Re: Pulmonary Hypertnsion Can't wait! Can't Wait! Can't Wait!Kathie> >> > I was recently told that I am in the Class IV; which is the reason > that I would faint so much. As long as I sit and do absolutely > nothig, not even talk, then I would be comfortable, but even trying > to get up would cause me to so short of breath that I would faint. > We bought a lift chair which works very good for getting out of the > chair. (Although I always worry that it is going to catapult me > across the room). But...since I have had my transtrach procedure, I > have only fainted twice. Once when I picked up my little dog and the > other time, I was picking something up from the floor. I took > Trakleer for almost a year and then was unable to take it any longer > and the doctor switched me to Revatio. I dont know if it helps or > not but I take it regularly. Insurance has agreed to pay for it for > one year only. Alot of people have asked me about my transtrach and > if I would do it again. Well.....that is a hard question for me. I > have had infections since the surgery. Cleared up the one on the > inside and then I get one on the outside of my neck. Cleared it up > and wham..here it is again. But as far as the trach itself is > concerned. Most of the time I do not even realize it is in my neck. > It is like having pierced ears. You notice it at first and then not > again. I love the silence, the calm feeling and not having sore > noses, ears or nose bleeds. It takes approx. 5 min. to clean it in > the morning and before bed. I used to be squeamish about it but not > anymore. Apria is supposed to deliver the supplies but so far they > havent but I was given quite a bit so I am not out yet. The negative > sides of it for me....I have not gone down on my oxygen usage. Still > require 10L. I am still hoping it will happen but even if it doesnt, > I can tolerate 10L and more this way. Thank all of you who emailed > me and asked me about it. I was negligent in replying, gues I was > messing with Apria so much. We have rented an RV to drive to San > (only 15 hours from Phoenix), will be glad to meet everyone > and then of course, will get to see my children since they live in > Dallas and Weatherford.> > Am anxious to meet Kathy as she is coming to my town next week.> > Thanks again everyone and I hope to see you soon.> > L> > NIPF02 PH 06 Transtrach 06> >> Quote Link to comment Share on other sites More sharing options...
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