Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Thanks Peggy and Sher Yes I am packed, but most of the stuff I won't need until days later. I do need to bring my meds to use while waiting, and enough O2 to get me to and from the hospital, just in case the docs don't like the lungs. The hospital is somewhere between 30 minutes to an hour depending on traffic and time of day and weather. we had another snow storm last night. Philadelphia schools are closed again. Pink Joyce IPF 3/06 Pennsylvania Donate Life just received call from transplant center -- i am on the list � Pink�Joyce�IPF 3/06��Pennsylvania� Donate�Life Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 > Congratulations Joyce...........that is wonderful news. I am hoping both our calls come in very quickly. Take care till then. Make a couple of lists as to who you want called/notified......like O2 co/mail person, with their numbers, etc..........so things just do not continue comnig. Take carer, Kathy...fl pf...4/07 Wtg...lung tx. " call " > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 > Congratulations Joyce...........that is wonderful news. I am hoping both our calls come in very quickly. Take care till then. Make a couple of lists as to who you want called/notified......like O2 co/mail person, with their numbers, etc..........so things just do not continue comnig. Take carer, Kathy...fl pf...4/07 Wtg...lung tx. " call " > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 > Congratulations Joyce...........that is wonderful news. I am hoping both our calls come in very quickly. Take care till then. Make a couple of lists as to who you want called/notified......like O2 co/mail person, with their numbers, etc..........so things just do not continue comnig. Take carer, Kathy...fl pf...4/07 Wtg...lung tx. " call " > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 joyce what wonderful news. congratulations. ring phone ring. may, 49, uip (who has turned into a late lurker) glasgow, scotland > > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 joyce what wonderful news. congratulations. ring phone ring. may, 49, uip (who has turned into a late lurker) glasgow, scotland > > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 joyce what wonderful news. congratulations. ring phone ring. may, 49, uip (who has turned into a late lurker) glasgow, scotland > > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Well Hello Missy Late Lurker May..... How good to see ya here again. How are you doing ? How is the family ?Do you hear from Z ? How is she doing ? I miss you two. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." joycewhat wonderful news. congratulations.ring phone ring.may, 49, uip (who has turned into a late lurker)glasgow, scotland>> just received call from transplant center -- i am on the list> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Congratulations!!! I'm working toward the same call...hopefully after my next transplant team appt. in April (before which I just have to lose 20 lbs), I will be getting that same phone call!!! Of course, by then, you will already have your new lung(s)!!!!! Steve aka...Knip IPF 9/07 confirmed via VATS 12/07 57 New Hampshire > > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2009 Report Share Posted February 4, 2009 Pink, OMG...so fast!!!I wish you a speedy phone call and a speedy and pain free recovery to a better breathing life. You'll be in my thoughts. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Joyce T Rosenberg wrote: just received call from transplant center -- i am on the list Pink Joyce IPF 3/06 Pennsylvania Donate Life No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.16/1930 - Release Date: 2/2/2009 7:51 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi Steve and Jack, I’m looking forward to meeting you both at noon today in Dover. I’ll be wearing my USS C Calhoun subvets ballcap and leather jacket Ken Baker UIP/IPF 12/05 New Hampshire From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of czd002 Sent: Wednesday, February 04, 2009 8:59 PM To: Breathe-Support Subject: Re: list Congratulations!!! I'm working toward the same call...hopefully after my next transplant team appt. in April (before which I just have to lose 20 lbs), I will be getting that same phone call!!! Of course, by then, you will already have your new lung(s)!!!!! Steve aka...Knip IPF 9/07 confirmed via VATS 12/07 57 New Hampshire > > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Thanks May Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: listTo: Breathe-Support Date: Wednesday, February 4, 2009, 6:13 PM joycewhat wonderful news. congratulations.ring phone ring.may, 49, uip (who has turned into a late lurker)glasgow, scotland>> just received call from transplant center -- i am on the list> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Kathy thanks for your suggestions wouldn't it be neat if both calls come at the same time !?! Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: listTo: Breathe-Support Date: Wednesday, February 4, 2009, 5:03 PM > Congratulations Joyce....... ....that is wonderful news. I am hoping both our calls come in very quickly. Take care till then. Make a couple of lists as to who you want called/notified. .....like O2 co/mail person, with their numbers, etc......... .so things just do not continue comnig.Take carer,Kathy...flpf...4/07Wtg...lung tx. "call"> just received call from transplant center -- i am on the list> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Thanks Steve Keep losing those pounds so you can get on the list. since learning about diabetes, caused by high doses of prednisone, watching carbs, i am noticing a difference, a gradual decrease in my weight they put me on a 1200 calorie, 150 grams of carbs diet counting the carbs is becoming easy they want me to eat the same number of carbs 3 times a day -- about 45 grams per meal i am taking a 5 week diabetes class at the local hospital earlier this week, i was down to 15 mgs prednisone, and the glucose levels were down too Tuesday I went back up to 30 mgs, because of upset stomach, and stopped Cellcept for a couple of days -- glitch in getting cellcept with new prescription company, need prior authorization -- more frustration -- yuk -- makes me see RED Steve -- did you consult with the dietician at the transplant center? If necessary, consult with her again. Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: listTo: Breathe-Support Date: Wednesday, February 4, 2009, 8:58 PM Congratulations! !! I'm working toward the same call...hopefully after my next transplant team appt. in April (before which I just have to lose 20 lbs), I will be getting that same phone call!!! Of course, by then, you will already have your new lung(s)!!!!! Steve aka...Knip IPF 9/07 confirmed via VATS 12/0757 New Hampshire>> just received call from transplant center -- i am on the list> > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Thanks Bruce Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: listTo: Breathe-Support Date: Wednesday, February 4, 2009, 12:11 PM PinkCongratulations.>> just received call from transplant center -- i am on the list>>> Pink Joyce IPF 3/06 Pennsylvania> Donate Life> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Thanks Pink Joyce IPF 3/06 Pennsylvania Donate Life just received call from transplant center -- i am on the list Pink Joyce IPF 3/06 Pennsylvania Donate Life No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.233 / Virus Database: 270.10.16/1930 - Release Date: 2/2/2009 7:51 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi Pink, I have been listed since last June (08). As time goes by, it's depressing that I haven't gotten the call. At first I was hoping it wouldn't come too soon, because I was so nervous. Now, I am anxious to get the call - but I have a high anti-body count. The docs have explained that they are not optimistic that a donor match will be found, but stranger things have happened. Anyway, congrats to getting listed! That's great news. Tina IPF 04/07 PH 11/07 listed for tx 06/08 Ohio Tina just received call from transplant center -- i am on the list Pink Joyce IPF 3/06 Pennsylvania Donate Life No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.233 / Virus Database: 270.10.16/1930 - Release Date: 2/2/2009 7:51 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Ken Well, guess now its wait and hope you take pictures, knowing you will incur the wrath of Peggy if you don't. As, now I'm curious to see the ballcap and jacket that you've described. > > > > just received call from transplant center -- i am on the list > > > > > > Pink Joyce IPF 3/06 Pennsylvania > > Donate Life > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Tina Sorry your call has been slow and I know the agony of the wait must be very difficult. I've seen some calls earlier that perhaps seemed even appropriate and some when time had grown desperately short. However, I've seen the calls come and some that were among the poorer odds. I've seen the successes in both situations. Am I correct that you're listed in Pittsburgh? If so, they do manage to transplant an extremely high percentage of their persons listed. Even so, have you considered double listing? I know Cleveland Clinic is close to you and they also have high ratios. > > > > > > > > just received call from transplant center -- i am on the list > > > Pink Joyce IPF 3/06 Pennsylvania > Donate Life > > > No virus found in this incoming message. > Checked by AVG - http://www.avg. com > Version: 8.0.233 / Virus Database: 270.10.16/1930 - Release Date: 2/2/2009 7:51 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Pink...I misunderstood about "the call". When you said you are listed I thought that was the call...but it's not unusual for me to get things tangled! My best wishes are never tangled however! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: list Pink, OMG...so fast!!!I wish you a speedy phone call and a speedy and pain freerecovery to a better breathing life. You'll be in my thoughts. Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]-->Joyce T Rosenberg wrote: just received call from transplant center -- i am on the list Pink Joyce IPF 3/06 Pennsylvania Donate Life No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.233 / Virus Database: 270.10.16/1930 - Release Date: 2/2/2009 7:51 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 thanks sher it is easy to get mixed up with OD i do it all the time Pink Joyce IPF 3/06 Pennsylvania Donate Life just received call from transplant center -- i am on the list Pink Joyce IPF 3/06 Pennsylvania Donate Life No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.233 / Virus Database: 270.10.16/1930 - Release Date: 2/2/2009 7:51 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 hope your call comes soon Tina thanks for your good wishes Pink Joyce IPF 3/06 Pennsylvania Donate Life just received call from transplant center -- i am on the list Pink Joyce IPF 3/06 Pennsylvania Donate Life No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.233 / Virus Database: 270.10.16/1930 - Release Date: 2/2/2009 7:51 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi Pink... Yes, I have met with the Transplant Team dietician...and lo and behold, I have been doing all the right things so far. That's probably why I was able to lose 25 pounds while on prednisone!!! Now that I am off, the last 20 should just melt off...hee hee hee. By the way, just got back from meeting up with Jack and Ken for lunch. We had a great time!! Ken should be posting the picture anytime now!! I'm just disappointed that Jack was dressed normally...no tutu!!!! And, of course, that's normal for a " Maine- iac " ...flannel shirt!!!! Steve aka...Knip IPF 9/07 confirmed via VATS 12/07 57 New Hampshire > > > > just received call from transplant center -- i am on the list > > > > > > Pink Joyce IPF 3/06 Pennsylvania > > Donate Life > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 sounds great Steve wish i could have joined you guys for lunch Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: listTo: Breathe-Support Date: Thursday, February 5, 2009, 4:37 PM Hi Pink...Yes, I have met with the Transplant Team dietician... and lo and behold, I have been doing all the right things so far. That's probably why I was able to lose 25 pounds while on prednisone!! ! Now that I am off, the last 20 should just melt off...hee hee hee. By the way, just got back from meeting up with Jack and Ken for lunch. We had a great time!! Ken should be posting the picture anytime now!! I'm just disappointed that Jack was dressed normally...no tutu!!!! And, of course, that's normal for a "Maine-iac"...flannel shirt!!!! Steve aka...Knip IPF 9/07 confirmed via VATS 12/0757 New Hampshire> >> > just received call from transplant center -- i am on the list> > > > > > Pink Joyce IPF 3/06 Pennsylvania > > Donate Life> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 sounds great Steve wish i could have joined you guys for lunch Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: listTo: Breathe-Support Date: Thursday, February 5, 2009, 4:37 PM Hi Pink...Yes, I have met with the Transplant Team dietician... and lo and behold, I have been doing all the right things so far. That's probably why I was able to lose 25 pounds while on prednisone!! ! Now that I am off, the last 20 should just melt off...hee hee hee. By the way, just got back from meeting up with Jack and Ken for lunch. We had a great time!! Ken should be posting the picture anytime now!! I'm just disappointed that Jack was dressed normally...no tutu!!!! And, of course, that's normal for a "Maine-iac"...flannel shirt!!!! Steve aka...Knip IPF 9/07 confirmed via VATS 12/0757 New Hampshire> >> > just received call from transplant center -- i am on the list> > > > > > Pink Joyce IPF 3/06 Pennsylvania > > Donate Life> >> Quote Link to comment Share on other sites More sharing options...
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