Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Nina, i am so glad that you are feeling better. I know my family is wonderful and very supportive but when i talk online to the group, everyone understands exactly what I am going through. You mentioned Trach involvement, my Tracheostomy that i have isn't permanent but because of the scarring that the RP caused, this area has narrowed and my vocal cords have lost some of its elasticity. So hopefully i can get off of this Pred. then eventually the Metho, then my doctors will talk about surgery to my vocal cords to help them expend wider when they open. It seems every time i get down below 15mgs of pred. i have a little flare. I am trying to think positive and not think about the flares and maybe i won't have one when i do get below 15mgs. I am down to 11 mgs now and not having any problems. I just saw my Rhuemy today and she is so pleased with how i am responding to the Metho. She said she had another patient who is not responding to anything, she was very concerned about this person. She didn't go into details but i could tell see her concern written on her face. I will be flying to San Diego where i see Pulmonary doctor there who specializes in RP and stenting and other Auto immune diseases and it's effects on the Airway. I am leaving on June 2, and returning on the 5th. We are going to fly into LAX, and drive down the coast to Sandiego on the 4th. i can't wait to see San Diego, i think it is so pretty there. You take care and i will stop rambling here.....Bye, thanks THANKS FOR RESPONDING..I'M FEELING BETTER TODAY..ABOUT MYSELF..I'M 58..I HAVE A WONDERFUL HUSBAND ,4 KIDS, 8 GRANDKIDS,AND A GREAT GRANDSON ON THE WAY..I'M VERY LUCKY THAT I'M SURROUND BY LOVE..BUT SOMETIMES YOU JUST WANT TO TALK TO SOMEONE THAT KNOWS ABOUT THE PAIN YOU GO THROUGH..RP HAS TAKEN MOST OF THE CARTLAGE IN MY NOSE ,MY LEFT EAR AND NOW MY THROAT IS INVOLVED..WHEN I WAS FIRST TOLD I HAD RP,,THE ATTACK WAS IN MY THROAT,,IT SWELLED CLOSED 2 TIMES...BUT NOT THAT BAD SCENSE ..THE DOCTORS ARE NOW TALKING ABOUT REPLACING THE CARTLAGE IN MY NOSE...THEY STARTED ME ON A CHEMO DRUG,CYTOXEN, AND IT HAS HELP WITH THE ATTACKS,,I'M ALSO TAKING PREDNSONE ...THANKS AGAIN FOR TAKING THE TIME RESPONDING ..NINADISCLAIMER!!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 May 9, 2002 Report Share Posted May 9, 2002 Hi, and welcome to the group. Sounds as if you have a wonderful family. Wow! Only 58 and you already have a great grandson on the way. I am 57, and it will be a long time before I am in that spot! Aren't grandchildren wonderful though? Hope you get all the answers that you need regarding your surgery. I've never heard of that before but maybe someone in the group has. Take care, and have a great day. Love, squeek --- nina5808 wrote: > THANKS FOR RESPONDING..I'M FEELING BETTER > TODAY..ABOUT MYSELF..I'M > 58..I HAVE A WONDERFUL HUSBAND ,4 KIDS, 8 > GRANDKIDS,AND A GREAT > GRANDSON ON THE WAY..I'M VERY LUCKY THAT I'M > SURROUND BY LOVE..BUT > SOMETIMES YOU JUST WANT TO TALK TO SOMEONE THAT > KNOWS ABOUT THE PAIN > YOU GO THROUGH..RP HAS TAKEN MOST OF THE CARTLAGE IN > MY NOSE ,MY LEFT > EAR AND NOW MY THROAT IS INVOLVED..WHEN I WAS FIRST > TOLD I HAD > RP,,THE ATTACK WAS IN MY THROAT,,IT SWELLED CLOSED 2 > TIMES...BUT NOT > THAT BAD SCENSE ..THE DOCTORS ARE NOW TALKING ABOUT > REPLACING THE > CARTLAGE IN MY NOSE...THEY STARTED ME ON A CHEMO > DRUG,CYTOXEN, AND IT > HAS HELP WITH THE ATTACKS,,I'M ALSO TAKING PREDNSONE > ...THANKS AGAIN > FOR TAKING THE TIME RESPONDING ..NINA > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Thanks for forwarding the message, Liz. Nina, I will be praying for you. Please remember to let us all know how your surgery turns out. love, squeek --- Cobb wrote: > > Note: forwarded message attached. > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 --- alangley11844 wrote: > HELLO ALL,,,THIS IS NINA ,, I HAD TO JOIN AGAIN TO > GET MYSELF > ON AGAIN...I'M HANGING IN THERE..HARD AT TIMES..THE > SURGERY TOOK > GOOD . BUT MY EAR IS STILL IN A FLAIR UP MODE > ..THESE TIMES ARE THE > PITS...BUT I CAN BREATH THROUGH MY NOSE AGAIN AND > THAT IS A BLESSING.. > WHEN THE EAR BEHAVES I'LL BE ON THE UPWARD SWING > ...PRAY IT DOESN'T > LAST MUCH LONGER...YOU ALL ARE IN MY THOUGHTS > ...NINA > > Nina, great to hear from you, So glad to hear the surgery was successful, and pray that the ear flare settles down quickly. Things are always better when you can breathe!!!LOL. Take care of yourself, you are in our prayers, love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Nina, So glad to hear your surgery went well. Hope your ear flares let up and you feel better real soon. SandyHELLO ALL,,,THIS IS NINA ,, I HAD TO JOIN AGAIN TO GET MYSELFON AGAIN...I'M HANGING IN THERE..HARD AT TIMES..THE SURGERY TOOK GOOD . BUT MY EAR IS STILL IN A FLAIR UP MODE ..THESE TIMES ARE THE PITS...BUT I CAN BREATH THROUGH MY NOSE AGAIN AND THAT IS A BLESSING..WHEN THE EAR BEHAVES I'LL BE ON THE UPWARD SWING ...PRAY IT DOESN'T LAST MUCH LONGER...YOU ALL ARE IN MY THOUGHTS ...NINADISCLAIMER!!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 September 1, 2002 Report Share Posted September 1, 2002 Hi Nina Wehre in WV did you go, I just came back from Big Bear Lake. We camp there all the time. Maybe I missed it but where are you from. I am close to town WV dawn alangley11844 wrote: HELLO ALL,,,JUST WANT TO WISH ALL A GOOD LONG WEEK END...I'M TAKING A BREAK AND GOING TO OUR CAMPER IN WEST VA. ..JUST TO WATCH THE DEER PLAY..LOL....AWAY FROM DOCTORS....LOVE AND PRAYERS COMING YOUR WAY...NINA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 HI DAWN,, I LIVE IN PA..BUT OUR CAMPER IN ON OUR SON'S FARM IN WEST VA. OUT SIDE OF CHARLESTOWN...I HAVE HEARD OF MORGETOWN,,I'LL HAVE TO LOOK ON THE MAP AND SEE HOW FAR YOU ARE AWAY....THAT EAR IS FINIALLY GOING BACK TO SLEEP....AND I'M STARTING DOWN ON MY PERDISONE..AND THE NOSE IS DOING GREAT...I'M STARTING TO FEEL HUMAN AGAIN...PRAISE GOD FOR THAT....HAVE A GREAT DAY.....NINA Re: Nina Hi Nina Wehre in WV did you go, I just came back from Big Bear Lake. We camp there all the time. Maybe I missed it but where are you from. I am close to town WV dawn alangley11844 wrote: HELLO ALL,,,JUST WANT TO WISH ALL A GOOD LONG WEEK END...I'M TAKING A BREAK AND GOING TO OUR CAMPER IN WEST VA. ..JUST TO WATCH THE DEER PLAY..LOL....AWAY FROM DOCTORS....LOVE AND PRAYERS COMING YOUR WAY...NINA Quote Link to comment Share on other sites More sharing options...
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