Organizing Records and Contact with University of PA

6/19/06
Took the day off from work today (Monday) to call the University of Pennsylvania lung center. Talked to Sara of Dr. Cooper's office and told her my pulmonary doctor had recommended I get evaluated for LVRS. I have been thinking about this since my visit with him last fall and, with the encouragement of Chris, Wes and Colleen from the copd support board , I have finally gotten my rear in gear!
I'm not sure I'm going to like this trip but I also don't like getting sob all the time (except when I'm not doing much) and if this relieves that sob, I'm all for it. Plus, Chris and several others said it really helped them and they'd do it again if they could. Colleen (from Effort, right down the road from me) is REALLY brave and testing out for a transplant. Nope, that's not for me. I'm not that brave at all. Plus I'll be too old in a couple of months...which may be a good or bad thing, depending on how one views it.
Anyway, I am to send copies of ALL my tests down to him and have all CTScans and x-rays sent to him. I called Advanced Radiology in Stroudsburg for my CTscans. They said I would have to sign another HIPPA release form to include either U of P or Dr. Cooper so they're going to fax it to the office and I'll get it tomorrow and fax it back.

So, Step 1...THE PHONE CALL ...completed.

Started getting all my testing results and other medical records together to take to work tomorrow to copy. I've got reports going back to 1994 so this will be interesting. Gonna' be a semi-large packet. I've sorted them all in order...all Pulmonary Function Tests (PFTs) together, all CTscans together, all x-rays together, my hospital stay (2005 - pneumonia) in one packet, my 2 6-min. walks and the bicycle stress test together, and then miscellaneous stuff (dubotamine stress test and an echocardiogram from way back). Probably sending too much but he can throw out what he doesn't want.

6/22/06
Back to work. Got the FAXed form to sign from Advanced Radiology giving them permission to release CTscans to U of P AND Dr. Joel Cooper. Also copied results of all my PFTs, xrays, ABGs, and scans plus the stress test, the 6-minute walk tests, and the report of my hospital stay last year. I hope this is enough...and not too much! Off in the mail with that, tomorrow.

Step 2 - ORGANIZATION - completed

6/23/06
So, off all my reports went to U of P today! I also included an "introductory/background" memo to Dr. Cooper so he could read a little about me that doesn't show up on the reports. I think I still have to call St. Luke's 'cause I probably have to sign a release form for the x-rays. Guess that will have to wait 'til Monday.

Step 3 - MAILING OF STUFF - completed. Next comes Step 4 - "Wait and See".

6/27/06
We got sent home from work early today because there has been so much rain the last week, creeks are flooding and closing roads. The pond down the road went over the road this morning so I drove through about a foot of water. Anyway, haven't heard anything from U of P and I'm not sure if I'm happy or not. I will be disappointed if they say I DON'T qualify but I'll be scared if they say I DO qualify. Very scared, I think. You know, when you're having a "good breathing day", you sort of think "Why go through with this; why rock the boat?" but then on the "bad breathing days", you figure you'd better get this operation and soon! Humans, at least THIS human, can be a little weird sometimes!

7/4/06
Well, nothing's happening as of this holiday time. I haven't called down there yet because of all the serious flooding we had (and they had) last week but I think I will call this Thursday. I should also call the ctscan place and see if U of P called them for the scans or not. If not, I will ask that they send them down.
Isn't it funny? First you DON'T want to hear and then when you don't hear, you WANT to hear from them. I have a feeling they looked at my file and decided I was way too far gone to even think of LVRS.

7/5/06
Well, got a little nervous so finally called. They said they just got the files on Friday (??) and Sarah (assistant) is going to look through them and see if they need anything else. She is going to call for the scans and I shall call St. Luke's and Palmerton and ask them to forward any x-rays down to U of P. This certainly isn't the prompt response Colleen got but at least I've not been turned down...yet!

7/8/06
STILL haven't heard back from U of P. I just doubled checked and I sent all that information on 6/23...and Sara at U of P said they didn't have any flooding....so how come Colleen got a response in 3 days and it's taken ... oh, I just looked...it's only been 2 weeks. My, how time seems to drag when you're anxiously waiting for something!
I've wondered what I will do if I get turned down. I think I will be very disappointed, to say the least, and then I think I might look into getting the TTO system. I'm so tired of this nose hose. Only trouble with the TTO is that when I'm at work and have to get up to go to the files or wait on a customer or something, I just take the cannula off and go do whatever then put it back on when I get back to my desk. Won't be able to do that with the TTO. Plus, here at home I use the concentrator and when I go out in the barn, I use the portable. I wonder how hard it would be to switch between the two.
As far as a transplant, I don't think I'd want to go that route...at least not at this point. That is a VERY SERIOUS operation and there are too many complications that could arise. I think I'd rather not do that at all. Of course, I'm not at the stage where it's "tx or die" (at least I don't THINK I am) and when I DO get to that stage, I think I'll be too old for the tx anyway so worrying about it might be a moot point. Oh, if only I knew then (back in 1985 when I was first dx'd) what I know now, I'd be in much better shape. If only I had quit smoking THEN! Oh well, can't waste time on the "if onlys"....got to work on the here-and-now and the future. Too soon old; too late smart.

7/14/06
Still haven't heard back from U of P. This is getting scarey. I mean, they could at least call to let me know if they're even reviewing my file. If I don't hear from them by Monday afternoon, I'll call Tuesday from work. IF I'm accepted, I KNOW they're going to tell me to get some rehab under my belt so then I'll have to figure out how to handle that. I guess I'd have to be in a regular rehab program so there'd be proof that I had completed one so I guess that means Palmerton Hospital again. I f so, I'm going to go to the Pulmo Rehab this time and not the Cardiac Rehab. I really don't like (and haven't heard good things about) Palmerton since the two local hospitals merged into the Blue Mountain Health System. Heck, this is the hospital where I took my 6 min. walk tests and they had me walk for the full 6 mins. even though my sats dropped to 74! That doesn't bode good, ya' know.

7/21/06
Well, here it is, Friday the 21st, and I STILL haven't made that second call to U of P. What is going on in my mind? Why am I afraid to call them? Either they're going to say "yes" (if it was "yes", I figure they would have called) or they're going to say "no"....easy as that. Oh, there is the 3rd alternative..."Please come in for more testing". I wish I could be like others on the board that just take the bulls by the horns and keep on going, pushing...until a problem is solved or a solution is reached. Me? I just wish-wash along.
I think I'm going to join the St. Luke's Center across from Kattner's and start exercising more. AND, Bob is going to go with me...come hell or high water. He's overweight and his back hurts...hmmm, those two tend to go together. It'll also help his depression.