Re: Welcome to the Group Trucks

[Guest guest]

Welcome to the group!

Sorry that you are having such a time of it. I have never had trachea involvement so don't know what to tell you on that. There are those who have never had a ear flare but have had tracheae involvement but you will have to hear it from them. This is the greatest group of people you will ever have the chance to meet. Just ask all the questions you would like and they will answer you.

At least you are going to one of the best in RP. Trentham is well know that is for sure. Good luck and keep posting.

Lots of Love

Glenda

RP or idiopathic??

Hello,I am currently in the middle of the RP debate. Do I have it or not? I travel to see Dr. Trentham and Dr. Armin Ernst at Beth Israelin Boston. I am greatly relived to have found qualified caregivers! I am 39, married female (3 kids, 15, 11, 9) with a hearing loss in'92, persistent cough and "asthma" for the last 2 1/2 years. Turnsout, I had a tracheal stenosis which made breatheing increasinglydifficult. I had a rigid broncoscopy on 11/01/01 with steriods injected into thesite, by Ernst. Also a tracheostomy (placed 10/04/01)was removed andis healing nicely. I have none of the other symptoms associated withRP. Biopsies (taken by my local ENT during a questionable procedure) werenot definative of RP. If stenosis reoccurs I will be biopsiedproperly by Ernst. I will be seeing Drs. Trentham and Ernst again intwo weeks.I am slowly regaining my strength but the wonderful aspect is theabitlity to breathe and cough in a natural manner. I can go upflights of stairs and even do 10 jumping-jacks with no gasping! I'venot tested any further yet but hope to get adventurous soon.My main concern now is trying to get HealthNet to pay forout-of-network care. Actually, my husband is handleing that alongwith everything else in the household. I sincerely hope I recoverbefore he wears himself out. Trucks

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.295 / Virus Database: 159 - Release Date: 11/1/2001

[Guest guest]

Welcome to the group!

Sorry that you are having such a time of it. I have never had trachea involvement so don't know what to tell you on that. There are those who have never had a ear flare but have had tracheae involvement but you will have to hear it from them. This is the greatest group of people you will ever have the chance to meet. Just ask all the questions you would like and they will answer you.

At least you are going to one of the best in RP. Trentham is well know that is for sure. Good luck and keep posting.

Lots of Love

Glenda

RP or idiopathic??

Hello,I am currently in the middle of the RP debate. Do I have it or not? I travel to see Dr. Trentham and Dr. Armin Ernst at Beth Israelin Boston. I am greatly relived to have found qualified caregivers! I am 39, married female (3 kids, 15, 11, 9) with a hearing loss in'92, persistent cough and "asthma" for the last 2 1/2 years. Turnsout, I had a tracheal stenosis which made breatheing increasinglydifficult. I had a rigid broncoscopy on 11/01/01 with steriods injected into thesite, by Ernst. Also a tracheostomy (placed 10/04/01)was removed andis healing nicely. I have none of the other symptoms associated withRP. Biopsies (taken by my local ENT during a questionable procedure) werenot definative of RP. If stenosis reoccurs I will be biopsiedproperly by Ernst. I will be seeing Drs. Trentham and Ernst again intwo weeks.I am slowly regaining my strength but the wonderful aspect is theabitlity to breathe and cough in a natural manner. I can go upflights of stairs and even do 10 jumping-jacks with no gasping! I'venot tested any further yet but hope to get adventurous soon.My main concern now is trying to get HealthNet to pay forout-of-network care. Actually, my husband is handleing that alongwith everything else in the household. I sincerely hope I recoverbefore he wears himself out. Trucks

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.295 / Virus Database: 159 - Release Date: 11/1/2001