8/1/06
Called Dr. Cooper's office today; I spoke with Rebecca this time. She said the girl that's been handling my file (Sarah) is no longer with them. It appears they are waiting for my scans and x-rays and Sarah never told anyone about me. Rebecca said it didn't indicate who was supposed to be calling for those so I said I would do that. So, this is good news, so far. At least I've not been relegated to the “circular file” yet! Then she went on to say that if I don't qualify for the LVRS, Dr. Cooper is going to be one of the doctors doing the new stent procedure...it's approved overseas and will be going into trials over here in the fall. I said, “Oh, the valves” and she said, no, it's different...much like a stent they put in clogged arteries to open them up. Now, this would be good IF my problems were in the medium/large airways but I have a feeling all my problems are in the teeny tiny airways but we will see. So there's the old good news/bad news bit. Good news that I haven't gotten lost in the shuffle nor have I been turned down yet but bad news that it's still going to take a bit longer. Oh well, I've waited this long (since January when Dr. Zasik first suggested LVRS); I can wait a little longer. I just don't want Dr. Cooper to turn me down for the LVRS because he wants to try the stent on me instead. How will I know? I then asked about a guy named Wes from NC. She said yes, he's applied, too. I asked if we could get a group rate, LOL!
Step 4 - ACTUAL CONTACT WITH REBECCA- completed
8/2/06
Contacted Advanced Radiology for scans (they lost my previous HIPPA release so had to fax me another one), St. Luke's (x-rays - they faxed a HIPPA release), Gnaden Huetton (ditto) and Palmerton Hospital (ditto). Signed and sent all those back. Now it's back to the waiting game. I'm sure this HIPPA thing is good for some people but it sure is a pain in the butt. If insurance companies can get all my information and the govt. can get all my information without me having to sign a HIPPA each time, you'd think another hospital could do it too. Oh well. Government strikes again.
8/7/06
Rebecca from Dr. Cooper's office called today to let me know they got my CTscans. However, she is going on vacation and won't be able to review them with Dr. Cooper until after 8/16/06. I told her no problem; I was happy to hear they got them. She's going to Russia. How neat! Anyway, once again, hurry up and wait.
8/28/06
Well, hadn't heard anything from anyone for such a long time so I called Rebecca again today. She had a nice trip to Russia. Said Dr. Cooper was in surgery but she would talk to him when he got out...if not today, then Thursday or early next week. What I really don't understand is how Colleen got her stuff back so fast and it's been so long for me. I guess part of the holdup was the films they wanted. She did say they have them now.
Wes has posted about the stent requirements. Heck, I'm no where's near in those numbers!! It sounds like you have to be almost dead for the stent. Whew. RV and TLC (I think those are the numbers) must be double what mine are...or at least what mine were at the last pft. Come to think of it, I probably SHOULD get another pft since I haven't had one since the bout with pneumonia last year. Of course, I haven't been moving around much (exercising) so.................I just hope working and taking care of animals counts!
8/31/06
Rebecca from Dr. Cooper's office called this afternoon. Dr. Cooper wants to get some testing done (PFT, CTScan, VQ test, ABG and 6-min. walk) down there. She also asked if I'd like to be considered for a TX and I said, "No, thank you; not at this point in the game." Plus, TX cutoff is 65 and I'm only 1 1/2 months from there so it may be a moot point whether or not I want it. So anyway, tentatively scheduled for Day 1 of testing for LVRS on Friday, 9/8 and then more testing and interview on 9/13 at 11:00 a.m. They also want to do a 6-minute walk test but I know I'm going to die during that so they might as well schedule that first then we won't have to worry about the rest of the testing! I'm not afraid of the testing but right now I AM afraid of the LVRS 'cause my sob has been so horrible lately (even though the sats stay pretty good)...and I don't know what I'll do if they say 'Okay, let's go for it' 'cause I have to think of what I'm going to do for "after-care". Chris (COPD Support) told me she didn't have anyone for "after-care" either but she got a visiting nurse in to help. Hmmm, wonder if such is available up here? Gotta' check into that.
Step 5 completed - SETUP FOR TESTING, FINALLY!.
Called Dr. Cooper's office today; I spoke with Rebecca this time. She said the girl that's been handling my file (Sarah) is no longer with them. It appears they are waiting for my scans and x-rays and Sarah never told anyone about me. Rebecca said it didn't indicate who was supposed to be calling for those so I said I would do that. So, this is good news, so far. At least I've not been relegated to the “circular file” yet! Then she went on to say that if I don't qualify for the LVRS, Dr. Cooper is going to be one of the doctors doing the new stent procedure...it's approved overseas and will be going into trials over here in the fall. I said, “Oh, the valves” and she said, no, it's different...much like a stent they put in clogged arteries to open them up. Now, this would be good IF my problems were in the medium/large airways but I have a feeling all my problems are in the teeny tiny airways but we will see. So there's the old good news/bad news bit. Good news that I haven't gotten lost in the shuffle nor have I been turned down yet but bad news that it's still going to take a bit longer. Oh well, I've waited this long (since January when Dr. Zasik first suggested LVRS); I can wait a little longer. I just don't want Dr. Cooper to turn me down for the LVRS because he wants to try the stent on me instead. How will I know? I then asked about a guy named Wes from NC. She said yes, he's applied, too. I asked if we could get a group rate, LOL!
Step 4 - ACTUAL CONTACT WITH REBECCA- completed
8/2/06
Contacted Advanced Radiology for scans (they lost my previous HIPPA release so had to fax me another one), St. Luke's (x-rays - they faxed a HIPPA release), Gnaden Huetton (ditto) and Palmerton Hospital (ditto). Signed and sent all those back. Now it's back to the waiting game. I'm sure this HIPPA thing is good for some people but it sure is a pain in the butt. If insurance companies can get all my information and the govt. can get all my information without me having to sign a HIPPA each time, you'd think another hospital could do it too. Oh well. Government strikes again.
8/7/06
Rebecca from Dr. Cooper's office called today to let me know they got my CTscans. However, she is going on vacation and won't be able to review them with Dr. Cooper until after 8/16/06. I told her no problem; I was happy to hear they got them. She's going to Russia. How neat! Anyway, once again, hurry up and wait.
8/28/06
Well, hadn't heard anything from anyone for such a long time so I called Rebecca again today. She had a nice trip to Russia. Said Dr. Cooper was in surgery but she would talk to him when he got out...if not today, then Thursday or early next week. What I really don't understand is how Colleen got her stuff back so fast and it's been so long for me. I guess part of the holdup was the films they wanted. She did say they have them now.
Wes has posted about the stent requirements. Heck, I'm no where's near in those numbers!! It sounds like you have to be almost dead for the stent. Whew. RV and TLC (I think those are the numbers) must be double what mine are...or at least what mine were at the last pft. Come to think of it, I probably SHOULD get another pft since I haven't had one since the bout with pneumonia last year. Of course, I haven't been moving around much (exercising) so.................I just hope working and taking care of animals counts!
8/31/06
Rebecca from Dr. Cooper's office called this afternoon. Dr. Cooper wants to get some testing done (PFT, CTScan, VQ test, ABG and 6-min. walk) down there. She also asked if I'd like to be considered for a TX and I said, "No, thank you; not at this point in the game." Plus, TX cutoff is 65 and I'm only 1 1/2 months from there so it may be a moot point whether or not I want it. So anyway, tentatively scheduled for Day 1 of testing for LVRS on Friday, 9/8 and then more testing and interview on 9/13 at 11:00 a.m. They also want to do a 6-minute walk test but I know I'm going to die during that so they might as well schedule that first then we won't have to worry about the rest of the testing! I'm not afraid of the testing but right now I AM afraid of the LVRS 'cause my sob has been so horrible lately (even though the sats stay pretty good)...and I don't know what I'll do if they say 'Okay, let's go for it' 'cause I have to think of what I'm going to do for "after-care". Chris (COPD Support) told me she didn't have anyone for "after-care" either but she got a visiting nurse in to help. Hmmm, wonder if such is available up here? Gotta' check into that.
Step 5 completed - SETUP FOR TESTING, FINALLY!.
Oh well. I am scared, just wanted to say that. Funny thing is, I don't think I'm scared of the LVRS, really, even if I just said I was in the previous sentence, LOL. I think I'm more scared of people telling me (docs) that I should consider having a TX and me not wanting a TX. Does that mean I'm going to die soon if I don't have the TX? Is that ridiculous or not? I'm also scared of not having someone I can lean on. I'm scared I don't have anyone to tell my scares to...someone in person. I'm too old for this stuff, ya' know! I wonder if I should mention the ovary problem to them while I'm down there. I could take the test results along with me, just in case. I mean, it'd be dumb to have the LVRS and then die of ovarian cancer, huh? And I've not had a really good heart test done recently. I guess they'll think of that. Boy, talk about being a worry-wart!!
9/1/06
Realized today that my testing and interview on the 13th conflicted with Karen H's vacation (and Karen R's day off) so I called to change it to the 20th. That's a bit of a bummer but Dr. Cooper is only available for interviews on Wednesdays. Oh well.
9/6/06
Called to check on appt. at U of P. Well, heck, they didn't even have me scheduled!! The scheduling lady said she'd call me back.
9/7/06
Well, she never called the 6th so I called again this morning from work. The only way they can schedule me for tomorrow is if I first meet her and then go about 5 blocks down the street to get the tests done. ???? This doesn't sound too organized at all. Sort of scarey right now. I really am getting second thoughts about this (first of all they never got back to me after the FIRST contact then they can't find my records and now this scheduling thing. Colleen said all her tests were done in the same building). Oh well, I might as well at least get the testing done and then, IF I qualify, I can decide if I want U of P or Temple. I mean, this has been dragging on since June and it's always U of P that's dragging their feet. That just doesn't give me good vibes.
Chris is keeping in touch to keep my spirits up and BJ-TX called this evening to see how I'm doing. I've also been reading Cathy-MD's LVRS Journal. It's both encouraging and scarey but it IS good reading.
Today was NOT a good day emotionally at all. After work, I went to get my hair done (cut and color) then to Walmart to get cat and dog food. Got out to the truck and I couldn't load the dog food into the truck!!! I tried and tried but got so sob (with O2), I thought I might as well die on the spot! Finally swallowed my pride enough to flag a nice young man who came by and I asked him if he could load it. He was very nice about it but it made me feel sooooooo bad. I came home, told Bob he could unload the whole damn truck and I went into bed and curled up into a fetal ball and cried! I COULDN'T LOAD THE DAMN DOG FOOD!! What the hell am I doing here then? What the heck good am I anymore!? I'm going to bed.
2 comments:
Your candid explanations are loosening up my frigid emotions and allowing me to feel again (since my own diagnosis of COPD 2 wks ago); the best ones, laughing and now crying. Thank you.
"I COULDN'T LOAD THE DAMN DOG FOOD!! What the hell am i doing her then? What the heck good am I anymore!?" My thoughts exactly and why i came to this board and your blog.
Thanks,
Larry
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