Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 , thank you so much for sharing your good news. Yes I believe there is hope and we just have to keep believing. Thank you for your inspirational story and sharing it with us. so glad to have you in the group. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 Thanks for the encouragement! squeek --- wrote: > I have some good news I'd like to share with you all > that will maybe foster a little hope to those that > are new to this group. Here's my brief history: My > RP symptoms began in September 2000 and 6 months > later (March 29, 2001) I was diagnosed with RP and > Wegener's Granulomatosis with pretty severe > pulmonary involvement. My treatment plan included > Cytoxan, Bactrim and Prednisone. Now for the good > news: I finally started feeling a little better > around the first of February (2002 - that's 11 long > months) and have been able to reduce the Prednisone. > I have been down to 5 mg of Pred for 2 full weeks. > My breathing is getting significantly better. My > last Pulmonary Function Test showed an increased > FEV1 of 35% (it had been down to 21%). I have an > appointment back at the Mayo Clinic on April 22 and > hope to see the FEV1 even higher. My doctor gave me > some Ultram to help me deal with the painful > Prednisone withdrawal and it helped tremendously. > Now I don't even need them. > > So don't ever give up hope. I'm sure there will be > RP setbacks for all of us, but at least I have a > better understanding of how to help myself. One of > the things I did when first diagnosed was to come up > with a plan including 5 strategies that have helped > me keep focused. They include: medical (I have a > great bunch of doctors); physical (exercise, > exercise, exercise); nutritional (controlling that > diet is tough but worth it); spiritual (I keep > working on letting go and letting God); and > emotional (I'm blessed with a wonderful family and > then there's all of you in the support group). > > I've learned so much from everyone in the RP family > and keep finding out more with each email. Thank you > to everyone in the support group. > > My prayers are with all of us and our families. God > wants to help each one of us get through all of > this. So let Him. Keep the faith. > > Love to you all, my friends. > (KC) > > > > -- > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 , Good for you!! I like good news. I'm glad to see your PF has improved and you are doing much better. Hugs, Sandy I have some good news I'd like to share with you all that will maybe foster a little hope to those that are new to this group. Here's my brief history: My RP symptoms began in September 2000 and 6 months later (March 29, 2001) I was diagnosed with RP and Wegener's Granulomatosis with pretty severe pulmonary involvement. My treatment plan included Cytoxan, Bactrim and Prednisone. Now for the good news: I finally started feeling a little better around the first of February (2002 - that's 11 long months) and have been able to reduce the Prednisone. I have been down to 5 mg of Pred for 2 full weeks. My breathing is getting significantly better. My last Pulmonary Function Test showed an increased FEV1 of 35% (it had been down to 21%). I have an appointment back at the Mayo Clinic on April 22 and hope to see the FEV1 even higher. My doctor gave me some Ultram to help me deal with the painful Prednisone withdrawal and it helped tremendously. Now I don't even need them. So don't ever give up hope. I'm sure there will be RP setbacks for all of us, but at least I have a better understanding of how to help myself. One of the things I did when first diagnosed was to come up with a plan including 5 strategies that have helped me keep focused. They include: medical (I have a great bunch of doctors); physical (exercise, exercise, exercise); nutritional (controlling that diet is tough but worth it); spiritual (I keep working on letting go and letting God); and emotional (I'm blessed with a wonderful family and then there's all of you in the support group). I've learned so much from everyone in the RP family and keep finding out more with each email. Thank you to everyone in the support group. My prayers are with all of us and our families. God wants to help each one of us get through all of this. So let Him. Keep the faith.Love to you all, my friends. (KC) -- DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 , sounds like you really have it all together, good for you! The trick is to keep it together when the bad times come, and realizing that they will, and still be able to handle it. That's my goal. Somedays it's no problem, then there are days....but we all have those, and none of us has given up yet. There must be a "determination" gene that comes with our DNA for RP. I think determination sounds so much better than stubbornness, don't you? Love, Judy Re: A little good news Thanks for the encouragement! squeek--- wrote:> I have some good news I'd like to share with you all> that will maybe foster a little hope to those that> are new to this group. Here's my brief history: My> RP symptoms began in September 2000 and 6 months> later (March 29, 2001) I was diagnosed with RP and> Wegener's Granulomatosis with pretty severe> pulmonary involvement. My treatment plan included> Cytoxan, Bactrim and Prednisone. Now for the good> news: I finally started feeling a little better> around the first of February (2002 - that's 11 long> months) and have been able to reduce the Prednisone.> I have been down to 5 mg of Pred for 2 full weeks.> My breathing is getting significantly better. My> last Pulmonary Function Test showed an increased> FEV1 of 35% (it had been down to 21%). I have an> appointment back at the Mayo Clinic on April 22 and> hope to see the FEV1 even higher. My doctor gave me> some Ultram to help me deal with the painful> Prednisone withdrawal and it helped tremendously.> Now I don't even need them.>> So don't ever give up hope. I'm sure there will be> RP setbacks for all of us, but at least I have a> better understanding of how to help myself. One of> the things I did when first diagnosed was to come up> with a plan including 5 strategies that have helped> me keep focused. They include: medical (I have a> great bunch of doctors); physical (exercise,> exercise, exercise); nutritional (controlling that> diet is tough but worth it); spiritual (I keep> working on letting go and letting God); and> emotional (I'm blessed with a wonderful family and> then there's all of you in the support group).>> I've learned so much from everyone in the RP family> and keep finding out more with each email. Thank you> to everyone in the support group.>> My prayers are with all of us and our families. God> wants to help each one of us get through all of> this. So let Him. Keep the faith.>> Love to you all, my friends.> (KC)>>>> -->>>=====__________________________________________________ Quote Link to comment Share on other sites More sharing options...
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