Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hi, Thanks for the support. I live in Tiverton, Rhode Island so am pretty close to Boston. Maybe it would be a good choice to go there. I am 66,married, newly retired, love reading, poetry, dabbling in polymer clay. This e-mail is pretty unusual for me. I am usually pretty private but I feel pretty alone with this. I am not sure how bad I am. I just know it is getting harder to get my breath and I have no energy. Diagnosed June 06' with ipf and emphzema. right now have a cold and it went right to my lungs. Again thanks for support. Joyce wrote: , You will get about 1,000 responses telling you to use your 02! It is the best medicine for what ails you! Never push yourself when your 02 has dropped so low. Sit, immediatly, and slump. Breathe with mouth open until you bring your numbers up into the nineties. Trust me on this. Do not keep seeing a doc that you don't like. Your very life depends on your medical care. If you live in an area where it is possible, seek out a hospital and physician that specializes in interstitial lung diseases. Teaching hospitals are usually better. Yes, progression is very individual. There no absolutes with this mess. And, lastly.....you landed in a good place. You will love us! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hi, am new at this. i was diagnosed with pf 1 year ago, also emphzema. has not progressed much as of July. Don't really know what to expect. don't really like doc. I am supposed to use oxygen at 2 for exercise and I have resisted but i feel I need to. going to mailbox or up stairs my level goes to about 77-78. I guess that is not good. considering moving downstairs to den but feel like i am giving in. Know I am rambling but not sure what to ask. Is progression very individual? Glad for some answers. > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Hi, my husband knows about the disease but he won't discuss it much. I think he thinks if he dosesn't talk about it it will go away. but i do catch him on the internet looking for informaiton. Thanks for your support. stokh24761 wrote: I am sorry that you had to find the group under these conditions but so glad you found us, we welcome you with open arms. Private person or not these diseases are just to much to bare by yourself, to many unanswered questions and no one seems to really understand you or your feelings, accept right here in this group because everyone is relatively going through the same thing. I think you said you were married, does your husband know about this disease? Does he know how serious this is and does he support you?And dont cause anymore damage to your body then the diseases are already causing take your O2 your body needs it to survive.Sandie>> Hi, am new at this. i was diagnosed with pf 1 year ago, also emphzema. has not progressed much as of July. Don't really know what to expect. don't really like doc. I am supposed to use oxygen at 2 for exercise and I have resisted but i feel I need to. going to mailbox or up stairs my level goes to about 77-78. I guess that is not good. considering moving downstairs to den but feel like i am giving in. Know I am rambling but not sure what to ask. Is progression very individual? Glad for some answers. > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Hi, thanks for he feedack. I was diagnosed with a couple ct scans and breathing tests. I am seriously thinking of changing doctors but I want to wait because it is he who has me out of temporary disability insurance and I don't want to screw things upAny one use polimer clay for fun, need hints Thanks, claire ipf 06.Gwynne Keyland wrote: ,Dropping to 77-78 is definitely NOT good. I oftenfall that low, but when it happens to me I'm usuallyon 15 liters of oxygen. It sounds like your life woulddefinitely improve if you used your 02. Also, don'tforget the damage you do to the rest of your bodywhen it's starved for air. Oxygen is your friend.Using it or accommodating your life to it is not"giving in", it is taking care of yourself in order toprolong your life. You're doing battle with a bully,and you have to try to stay ahead of it.You say you don't like your doc. Is he a pulmonologist?How were you diagnosed? You need to find a doctorthat you like and trust, preferably at one of the largerteaching hospitals that has a department forinterstitial lung diseases (like PF). Also, ask lots ofquestions (take a list with you to the doc) and keeprecords of your healthcare. You can't manage yourdisease, but you can manage your healthcare. Mostof us could write books about how that has been afull-time job for us since diagnosis, sorry to say.Progression is very individual. It can move slowly orquite rapidly. What often happens to people is thattheir disease will progress somewhat (e.g., they haveless energy, cough & wheeze more, their sats dropfarther and more often, etc.), then they'll plauteauout and stabilize. How long each plateau lasts istotally variable and even varies within the sameperson. I've been at end stage IPF for over a year,with high 02 flows, little energy, poor test results,etc. I've been waiting for new lungs since March 2007;however, I've never fainted, never been to the ER,still have a healthy heart, and am relatively stable.I still get out and go places away from home withfriends and family... not as often, but I still go.This disease has a way of sneaking up on us.Don't wait until you are in a panic situation to dosomething. You're better off to anticipate problems,do some research, prepare for changes in breathingand mobility, and make the lifestyle changes that youneed in order to facilitate your life and keep active.Keep moving as long as you can, preferably at aPulmonary Rehab program, which can improve exercisetolerance if started early enough. It sounds like youalready have a pulse oximeter, which is also a must formost of us.I'm sorry you have to deal with PF along with emphysema,but this site is a great place with honest, caring peopleto help you learn how to LIVE with your disease. We'dlove to hear more about you. We usually close with ourname, diagnosis (dx) date, and place of residence. Welcome.Hugs,Gwynne IPF 7/04 listed for transplant 3/07 Texas Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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