Hello everyone

[Guest guest]

here,

I hope everyone is doing fine.

There are so many new people that i have not met, since i first joined the group. I have been off line a while. I started having some problems with my stent. Luckly It wasn't the stent, it was a lot of scar tissue that had completely covered the stent and it started blocking the entrance to my left lung. I didn't realize i was having any breathing trouble, because it was a slow and gradual process. That is one of the problems with rp. Anyway, I was sent to a doctor in San Diego, who has done a wonderful job with me. I have been flying back and forth there since this Jan 01.

I just flew back into town last week from an appointment, the 2nd stent that he replaced has healed nicely, my left lung has no scar tissue inside or near and around the stent. This was good news to my ears. I still have my Tracheostomy. Right now it has to stay, due to the narrowness and scar tissue that's has formed around the Trach area. This scaring happend while i was getting sick and prior to me having the Tracheostomy. I was told that if the hole closed that it wouldn't be enough space for me to breath. I've had it for nearly 3 years i think i can live with it a couple of more years.

But now i can start getting my check ups here in Texas with another doctor, that's in Tyler, Tx, who was a student Doctor training under the doctor that i am seeing in Ca. My doctor in San Diego still wants to see me every 6mos. That is fine with me, I didn't just want to completly stop seeing him. Now at least i can stop flying out to Ca. every other month. All that traveling really took a lot out of me.

This is one reason i stopped posting as much.

I think there was a misunderstanding of why i had not been posting. I know a lot of people could have used some info from me from what i have heard. I got criticized for it (what i felt was criticism), I care for everyone in this group as they do me. I know how hard it is for me to deal with this disease sometimes, I know the frustration of wanting to know more and getting all the info you can, but cant because the info out there is very little because of the rareness of this disease. We have to learn by everyones elses cases basically. I will never make anyone feel worse than they already do by making comments to where it seems they don't care because they are not posting. This disease already makes you feel like crap at times, I don't need anybody making me feel worse than i do. And to know that some people would get upset with you because you are ill and not have the energy or the strength to literally get on the computer, it was a little heart breaking and disturbing to me, it made me not want to post even more.

I will be 28yrs old on Dec 17th. On Jan 8, 2002 will be my fourth year with RP. With me knowing what i had already gone through. My mind was only focused on getting better, and traveling to see a doctor in another state. And still not knowing if i could even be helped. I just needed to make sure i was doing my part, and that was making sure my body was rested and taken care of. I knew that it was going to take everything inside of me to get through the emotional and physical pain i was about to endure. It wasn't so bad though. I hope you understand.

Take Care

Hi Heidi thanks for your call tonight,

Kim,

I am back now and will be posting regularly to the group. You can still email my address if you need too. As you've read my trip went great. I won't be back in San Diego until June 4, unless i decide not to have my 3 month check up in tyler.

love you

[Guest guest]

here,

I hope everyone is doing fine.

There are so many new people that i have not met, since i first joined the group. I have been off line a while. I started having some problems with my stent. Luckly It wasn't the stent, it was a lot of scar tissue that had completely covered the stent and it started blocking the entrance to my left lung. I didn't realize i was having any breathing trouble, because it was a slow and gradual process. That is one of the problems with rp. Anyway, I was sent to a doctor in San Diego, who has done a wonderful job with me. I have been flying back and forth there since this Jan 01.

I just flew back into town last week from an appointment, the 2nd stent that he replaced has healed nicely, my left lung has no scar tissue inside or near and around the stent. This was good news to my ears. I still have my Tracheostomy. Right now it has to stay, due to the narrowness and scar tissue that's has formed around the Trach area. This scaring happend while i was getting sick and prior to me having the Tracheostomy. I was told that if the hole closed that it wouldn't be enough space for me to breath. I've had it for nearly 3 years i think i can live with it a couple of more years.

But now i can start getting my check ups here in Texas with another doctor, that's in Tyler, Tx, who was a student Doctor training under the doctor that i am seeing in Ca. My doctor in San Diego still wants to see me every 6mos. That is fine with me, I didn't just want to completly stop seeing him. Now at least i can stop flying out to Ca. every other month. All that traveling really took a lot out of me.

This is one reason i stopped posting as much.

I think there was a misunderstanding of why i had not been posting. I know a lot of people could have used some info from me from what i have heard. I got criticized for it (what i felt was criticism), I care for everyone in this group as they do me. I know how hard it is for me to deal with this disease sometimes, I know the frustration of wanting to know more and getting all the info you can, but cant because the info out there is very little because of the rareness of this disease. We have to learn by everyones elses cases basically. I will never make anyone feel worse than they already do by making comments to where it seems they don't care because they are not posting. This disease already makes you feel like crap at times, I don't need anybody making me feel worse than i do. And to know that some people would get upset with you because you are ill and not have the energy or the strength to literally get on the computer, it was a little heart breaking and disturbing to me, it made me not want to post even more.

I will be 28yrs old on Dec 17th. On Jan 8, 2002 will be my fourth year with RP. With me knowing what i had already gone through. My mind was only focused on getting better, and traveling to see a doctor in another state. And still not knowing if i could even be helped. I just needed to make sure i was doing my part, and that was making sure my body was rested and taken care of. I knew that it was going to take everything inside of me to get through the emotional and physical pain i was about to endure. It wasn't so bad though. I hope you understand.

Take Care

Hi Heidi thanks for your call tonight,

Kim,

I am back now and will be posting regularly to the group. You can still email my address if you need too. As you've read my trip went great. I won't be back in San Diego until June 4, unless i decide not to have my 3 month check up in tyler.

love you