| Author |
Message |
Annette
Member
Username: Poohnettie
Post Number: 18
Registered: 05-2011
| | Posted on Wednesday, July 13, 2011 - 05:36 pm: | 
|
Hi everyone, I don't post very much sorry, but I do follow and read posts daily;)!! I completed my evaluation for a lung transplant last week at the University of Arizona and they are presenting me to the team tomorrow morning. I've met most of the team and they don't see any reason why I wouldn't be listed, thank goodness. I would receive a double lung if accepted. I hate the wait, though I know it's all worth it in the end!! Please say a prayer and thank you all for your support. Annette |
Jack R
Forum Leader
Username: Jack_r
Post Number: 495
Registered: 08-2010
| | Posted on Wednesday, July 13, 2011 - 06:48 pm: |
|
Annette,
Our thoughts and prayers are there for you.
Rest well tonight for tomorrow will bring good news.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.
Exercise - look around you and don't tell me you can't -Blog |
|
Annette
Member
Username: Poohnettie
Post Number: 19
Registered: 05-2011
| | Posted on Wednesday, July 13, 2011 - 07:14 pm: |
|
Thank you Jack!!!
Constrictive Bronchioltis
Waiting for transplant |
|
Holly
Member
Username: Holly
Post Number: 483
Registered: 09-2007
| | Posted on Wednesday, July 13, 2011 - 08:05 pm: |
|
Annette,
I pray you are listed and that your wait is short. If not just know it WILL happen and it will be worth it.GIGGLES
Holly Mulkerin
Medina Ohio
Heart transplant 1/28/09 I have a Happy Heart
Be kind. Remember that everyone you meet is fighting a hard battle. Harry Thompson
|
|
Annette
Member
Username: Poohnettie
Post Number: 20
Registered: 05-2011
| | Posted on Wednesday, July 13, 2011 - 08:40 pm: |
|
Thank you Holly. It's going to be a long night!!!
Constrictive Bronchioltis
Waiting for transplant |
|
Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 400
Registered: 01-2007
| | Posted on Wednesday, July 13, 2011 - 09:14 pm: |
|
We're all with you, Annette. Did they tell you what your LAS is, or will they tell you after they meet?
|
Annette
Member
Username: Poohnettie
Post Number: 21
Registered: 05-2011
| | Posted on Wednesday, July 13, 2011 - 09:31 pm: |
|
Hi Jay, thanks for the support. My transplant coordinator said it's probably going to be somewhere in the high 40's or 50's but I don't know for sure yet.
Constrictive Bronchioltis
Waiting for transplant |
|
Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 401
Registered: 01-2007
| | Posted on Wednesday, July 13, 2011 - 09:33 pm: |
|
Your wait should be short then (after you're listed). Note I didn't say 'if' you are listed.
I'll bet you have a very Merry Xmas this year. We're rooting for you.
|
Debi
Member
Username: Debilou
Post Number: 16
Registered: 05-2011
| | Posted on Wednesday, July 13, 2011 - 09:41 pm: |
|
No doubt in my mind, tomorrow will be a great day with great news and a look of a brighter future ahead...
... from your good buddy !!
...
Debi
Lung Transplant Candidate
COPD / Emphysema 12 yrs |
|
Annette
Member
Username: Poohnettie
Post Number: 22
Registered: 05-2011
| | Posted on Wednesday, July 13, 2011 - 09:41 pm: |
|
Thanks a million Jay;)!!! I hope are right.
Constrictive Bronchioltis
Waiting for transplant |
|
Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 475
Registered: 12-2009
| | Posted on Thursday, July 14, 2011 - 08:19 am: |
|
hoping that a donor is found quickly, the match is exact, operation goes without a hitch and your recovery is swift. May you experience few 'bumps' down the road and live a long and happy life . . . 
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
|
lynnie-nc
Member
Username: Lynnienc
Post Number: 7
Registered: 07-2011
| | Posted on Thursday, July 14, 2011 - 09:46 am: |
|
Annette,
My thoughts and prayers are with you, I will be traveling down your road next week as I have my first evualation appointment. I hope things go as smooth for me as went for you. Keep us posted.
Lynn
| Live everyday as though it is a miracle. |
|
Annette
Member
Username: Poohnettie
Post Number: 23
Registered: 05-2011
| | Posted on Thursday, July 14, 2011 - 11:38 am: |
|
Thank you everyone...I'm waiting for the call!!! As soon as I hear, I will post...Jack, thank you..
Constrictive Bronchioltis
Waiting for transplant |
|
Annette
Member
Username: Poohnettie
Post Number: 24
Registered: 05-2011
| | Posted on Thursday, July 14, 2011 - 06:46 pm: |
|
Hi, I wanted to let you know the team wasn't able to hear my case, they had an emergency, so they will be hearing my case in the morning. Another sleepless night!!
Constrictive Bronchioltis
Waiting for transplant |
|
Jack R
Forum Leader
Username: Jack_r
Post Number: 500
Registered: 08-2010
| | Posted on Thursday, July 14, 2011 - 08:46 pm: |
|
Annette,
Not unusual given they can't schedule transplants like normal surgery.
On a positive note your transplant is very active and that is a big plus.
You will be fine.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.
Exercise - look around you and don't tell me you can't -Blog |
|
Annette
Member
Username: Poohnettie
Post Number: 25
Registered: 05-2011
| | Posted on Friday, July 15, 2011 - 05:14 pm: |
|
I'M LISTED!!! Thank you everyone for your support and prayers!!
Constrictive Bronchioltis
Waiting for transplant |
|
Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 405
Registered: 01-2007
| | Posted on Friday, July 15, 2011 - 05:18 pm: |
|
YEA!!! 
I still say you'll have a very merry xmas this year.
|
Annette
Member
Username: Poohnettie
Post Number: 26
Registered: 05-2011
| | Posted on Friday, July 15, 2011 - 05:27 pm: |
|
Thank you Jay... I hope you are right;)!!!!
Constrictive Bronchioltis
Listed for double lung transplant with U of A |
|
Jack R
Forum Leader
Username: Jack_r
Post Number: 501
Registered: 08-2010
| | Posted on Friday, July 15, 2011 - 06:05 pm: |
|
Annette,
Congratulations! I knew you would be accepted as your "positive attitude" came through.
This journey, for you and your caregivers, is best supported by those who have preceded you. Read, exercise as best as possible (that is critical for your recovery), ask any ? that comes to mind and know that the rest of your life lies ahead.
Get a good nights sleep.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.
Exercise - look around you and don't tell me you can't -Blog |
|
DAP1122
Forum Leader
Username: Dap1122
Post Number: 2727
Registered: 05-2008
| | Posted on Friday, July 15, 2011 - 07:01 pm: |
|
Congrats Annette!!!
May your wait be short until God Blesses you!!!!
DAP
|
Annette
Member
Username: Poohnettie
Post Number: 27
Registered: 05-2011
| | Posted on Friday, July 15, 2011 - 08:18 pm: |
|
Thank you so very much DAP!!!..... Jack, I will get a goodnight sleep, finally;)!! seriously, thank you all for your support. Love this support group!!!
Constrictive Bronchioltis
Listed for double lung transplant with U of A |
|
Holly
Member
Username: Holly
Post Number: 486
Registered: 09-2007
| | Posted on Friday, July 15, 2011 - 08:54 pm: |
|
Congrats Annette. Let's pray for a short wait. First hurdle over!!!!
Holly Mulkerin
Medina Ohio
Heart transplant 1/28/09 I have a Happy Heart
Be kind. Remember that everyone you meet is fighting a hard battle. Harry Thompson
|
|
Annette
Member
Username: Poohnettie
Post Number: 28
Registered: 05-2011
| | Posted on Friday, July 15, 2011 - 11:47 pm: |
|
Thank you Holly.. Good luck Lynn with your evaluation, I will say a prayer, if you ever want to talk, feel free to email me.....Jay, what was your LAS score when you got your call? Just curious.
Thanks, Annette
Constrictive Bronchioltis
Listed for double lung transplant with U of A |
|
Tamara
Member
Username: Heppygirl
Post Number: 25
Registered: 05-2011
| | Posted on Saturday, July 16, 2011 - 03:39 am: |
|
Congratulations Annette! Glad you got listed!
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
|
Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 406
Registered: 01-2007
| | Posted on Saturday, July 16, 2011 - 09:08 am: |
|
Annette, My LAS was 37 when I was listed.
They told me not to worry, even though it was low, I would be called sooner than I might otherwise think.
I am 6'2", and in my hospital, almost everyone listed were pretty short, 5'6" or less. I heard that they would rather give lungs from a tall person to another tall person, rather than have to cut them up. I don't know if this had anything to do with it, but I got my first call (dry run) in 6 weeks, and had my lungs in a little over 3 months,.
|
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16348
Registered: 05-2003
| | Posted on Saturday, July 16, 2011 - 11:22 am: |
|
Dear Annette
I am late on the great news! Just to say Congratulations on hearing this news. Please stay in touch with us
Take care of yourself!
Rise'
CF- dx at 2yrs. 2nd double lung tx-05
Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery
Anas Hadeh MD, Cleveland Clinic, Weston
My Photos on Transplant Friends
|
|
Annette
Member
Username: Poohnettie
Post Number: 29
Registered: 05-2011
| | Posted on Saturday, July 16, 2011 - 11:09 pm: |
|
Wow Jay, that's certainly encouraging news! I'm not sure yet on my score but my coordinator said she thinks someplace in the high 40's to 50. Have to wait and see but that does seem pretty high, I hope she's right;)!!
Thank you Rise, I most definitely will keep you posted!
Constrictive Bronchioltis
Listed for double lung transplant with U of A |
|
Debi
Member
Username: Debilou
Post Number: 17
Registered: 05-2011
| | Posted on Sunday, July 17, 2011 - 03:18 am: |
|
So very very happy for you Annette !!
all the positive energy and warm prayers surrounded you , so there was no doubt that the good news would arrive. Live each day with a smile, as soon your "new" and "improved" life will be born!!
(I hope I am right behind you )
Debi
Lung Transplant Candidate
COPD / Emphysema 12 yrs |
|
dennis
Member
Username: Netforce
Post Number: 110
Registered: 10-2009
| | Posted on Monday, July 25, 2011 - 10:42 am: |
|
WOW am I late or what? I hope everything goes smooth for you and your wait a short one. I haven't been checking in like I should..stay safe and try to keep your legs under you,you'll need them after TX
Awaiting Bilaterial Lung Tx COPD/Emphzyma UWMC/William S.Middleton Veterns Hospital Madison WI.
Listed 10/2009 |
|
Annette
Member
Username: Poohnettie
Post Number: 30
Registered: 05-2011
| | Posted on Tuesday, July 26, 2011 - 12:15 pm: |
|
Thank you Dennis, I hope your "call" comes soon and we can share our stories together!!
Constrictive Bronchioltis
Listed for double lung transplant with U of A |
|
geoff
Member
Username: Ghewitt
Post Number: 1
Registered: 09-2010
| | Posted on Friday, July 29, 2011 - 07:31 am: |
|
dear annette, i will say a prayer so you are listed asap. Be aware that a listing is only one step toward a lung but a great one Geoff |
lynnie-nc
Member
Username: Lynnienc
Post Number: 8
Registered: 07-2011
| | Posted on Friday, July 29, 2011 - 12:06 pm: |
|
I was suppose to have my first evualation last Tues up in VA (3 hr drive) but guess what? VCU has not done transplants in 5 yrs. What a waste of time and $. My regular polmo did not really have a good explanation except that it was listed with his practice????? I am so frustrated. Now he is going to try to go Duke to start the evualation. Believe me I will be keeping a good eye open on this !! Time is wasting and I'm going thru another flare-up since yesterday and I can't breath even to walk a short distance. Back on Preds again, just when my face came back to it's normal size. I am so disappointed with Dr.'s This is the third pulmo Dr . I really liked this one and this happenes.
| Live everyday as though it is a miracle. |
|
ajs
Forum Leader
Username: Ajs
Post Number: 620
Registered: 03-2008
| | Posted on Friday, July 29, 2011 - 12:28 pm: |
|
Lynnie-
Kind of unreal that could happen, but you can't go wrong at Duke! You'll only wait a month or so if you can get listed there. Good luck!
Armand
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 483
Registered: 12-2009
| | Posted on Friday, July 29, 2011 - 01:23 pm: |
|
Morning Lynn,
Hard as it may seem, try not to get discouraged, I'm convinced that a major part of this process (and life in general) is maintaining a positive or good outlook on live. Yes it sure gets hard, especially with screw-ups like that happening, but in the end I find these things happen for a reason. When I was going to be listed I was given the choice of 2 facilities in AZ (where I was living at the time), did not care for either - one was just starting their transplant program, the other was a bit of a drive and I had no support down there. Ended up coming to San Diego where I have family, listing with UCSD and well, the rest is history. Never regretted any of it . . .
Stay well & be patient . . .
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
|
lynnie-nc
Member
Username: Lynnienc
Post Number: 9
Registered: 07-2011
| | Posted on Friday, July 29, 2011 - 03:47 pm: |
|
My first choice was Duke, it's farther away but one of the best. I do not know anyone down there but have a nephew that lives close to Richmond VA. So, yes mistakes happen, but believe this opened my eyes as to pay a lot more attention to what is going on and stay on top of the Dr.'s. Yes, things happen for a reason, I just the out come is a good one. How long did it take from the recommendation to an appointment to start the evualation Duke? I waited over a month this last fiasco.
Thanks to Jack an d ajs. Lynn
| Live everyday as though it is a miracle. |
|
ajs
Forum Leader
Username: Ajs
Post Number: 621
Registered: 03-2008
| | Posted on Friday, July 29, 2011 - 04:28 pm: |
|
Lynn,
I think I wanted to wait longer than they were willing to do. From my initial recommendation, I think it was 6-8 weeks, but it could have been sooner. Support is important, for sure. Duke is worth an extra hour or two driving. I'm happy to answer any questions about where to stay, etc. Good luck.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
lynnie-nc
Member
Username: Lynnienc
Post Number: 10
Registered: 07-2011
| | Posted on Friday, July 29, 2011 - 07:49 pm: |
|
Thanks ajs for the encouragement. I need it ! I will keep up the posts. I was feeling pretty good the last couple of weeks, doing things like lunch and shopping with my daughters and sister. But Crashed on Wed.If your oximeter reads in the 70's is that dangerous? If I sit and breath PLB it comes back up pretty quick. But I worry about going down in the 70's Thanks again everyone who shares thier own experiences. It helps us who are scared and new to transplants. Lynn
| Live everyday as though it is a miracle. |
|
Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 485
Registered: 12-2009
| | Posted on Friday, July 29, 2011 - 08:31 pm: |
|
I got down there several times Lynn, it isn't good for either you or the other organs, I assume you are on oxygen - I'd crank it up a bit when you see you levels dropping like that. Pursed lip breathing can also help.
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
|
Debi
Member
Username: Debilou
Post Number: 20
Registered: 05-2011
| | Posted on Friday, July 29, 2011 - 08:36 pm: |
|
Yes, I would say that 70's are a little scary... I dont like it when I drop to the 80's !! When it goes that low, whatever you are doing you need to stop and rest. You know your body the best so you can tell when it is working too hard. And like Jack says, it is not good for the rest of your organs ..(heart , kidney , liver, etc) It is good that you bounce back fast, .. do you keep your inhaler near by at all times? good luck in all the future plans ahead... hang in there... one day at a time..
Debi
Lung Transplant Candidate
COPD / Emphysema 12 yrs |
|
SSBAUER
Member
Username: Ssbauer
Post Number: 21
Registered: 12-2009
| | Posted on Saturday, July 30, 2011 - 08:49 am: |
|
Hi Lynn, Hope you are doing well today. How far are you from Pittsburgh? That is where my hubby had his TX at UPMC in 2005. I heard they opened up a new wing for transplants and it is really nice. I didn't feel like walking over to look Tuesday when we were there. They also have the Family House for patients to stay when they are there for test, treatment surgery or whatever. The support people are really comfortable there, too!!
BTW, he had a great check-up and the doctor told him to keep doing what he has been doing. He even lost 6 of the extra pounds he gained over the winter.
Best wishes to all TX recipients and may God bless all future donors and all donor families!! I thank God everyday for his donor!
wifeof1with1newlung
Diagnosed with IPF April 1999
Left lung TX 12/22/2005 - UPMC |
|
lynnie-nc
Member
Username: Lynnienc
Post Number: 11
Registered: 07-2011
| | Posted on Wednesday, August 03, 2011 - 11:31 am: |
|
Hi everyone, I am feeling lots better, but I'm upset I missed 4 Re-hab sessions. But the good news is I got a call from Duke and I have a date to start my evualtion, but not until the end of Sept. But that will give me time to catch up on all the shots they want you to have. I pray I stay well enough to see this through.
| Live everyday as though it is a miracle. |
|
ajs
Forum Leader
Username: Ajs
Post Number: 625
Registered: 03-2008
| | Posted on Wednesday, August 03, 2011 - 12:53 pm: |
|
Good news, Lynnie. They will want a colonoscopy too, if you haven't had one lately.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
Jack R
Forum Leader
Username: Jack_r
Post Number: 516
Registered: 08-2010
| | Posted on Wednesday, August 03, 2011 - 04:05 pm: |
|
Lynnie,
That is good news and don't worry. Your being concerned with catching on your Rehab reflects the correct mind set one needs for this journey.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.
Exercise - look around you and don't tell me you can't -Blog |
|
Debi
Member
Username: Debilou
Post Number: 21
Registered: 05-2011
| | Posted on Wednesday, August 03, 2011 - 07:58 pm: |
|
Hey everyone.. great great news.... Annette who started this post , under the "FIND OUT IF I GET LISTED" ... Just received her call !!! She recently was put on the list.. and this morning she was told her score was 38.9 .. then tonight at 5:30 they call and said come on it !!!! Please keep her in your prayers and hope that if it is a dry run, it is because a better one is on the way I know she is so nervous and happy all rolled into one. She has about an hour and a half drive to Tucson ... then it will be just the beginning of greatness ... I will keep you updated on her progress ....
Debi
Lung Transplant Candidate
COPD / Emphysema 12 yrs |
|
Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 417
Registered: 01-2007
| | Posted on Wednesday, August 03, 2011 - 11:24 pm: |
|
That IS great news, Debi. Thanks for sharing.
I still say that Annette will have a great xmas (and maybe a great labor day as well!)
|
ajs
Forum Leader
Username: Ajs
Post Number: 628
Registered: 03-2008
| | Posted on Thursday, August 04, 2011 - 07:05 am: |
|
Great news. That was sure a nice, short wait. We will be waiting for you to update us, Debi, since you seem to have an 'in'...
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
Live each day as if you were living forever, and live each moment as if it were your last.
|
|
Pam
Member
Username: Pame
Post Number: 60
Registered: 02-2010
| | Posted on Thursday, August 04, 2011 - 02:46 pm: |
|
Annette, her family, and donor family will be in our prayers.
Dx with Alpha1 1996
Double lung TX- July 29, 2010
University Health Science Center - San Antonio, TX
|
|
Debi
Member
Username: Debilou
Post Number: 22
Registered: 05-2011
| | Posted on Thursday, August 04, 2011 - 05:05 pm: |
|
Annette is doing great, and resting in ICU .. so far so good... prayers are being heard.. <3 <3
Debi
Lung Transplant Candidate
COPD / Emphysema 12 yrs |
|
chelle
Member
Username: Camochelle74
Post Number: 2
Registered: 08-2011
| | Posted on Sunday, August 07, 2011 - 01:27 pm: |
|
Good luck Annette. please let us know. I start my evaluation on sept 6 hoping to get on the list for a donor heart. |
Debi
Member
Username: Debilou
Post Number: 23
Registered: 05-2011
| | Posted on Sunday, August 07, 2011 - 06:42 pm: |
|
Update on Annette: She is doing great.. surgery went great and she is off ox2 now.. Today, which is four days afterwards, they have gotten her up and walking.. What wonderful news ... she is a very strong person and truly loved by all ....
Debi
Lung Transplant Candidate
COPD / Emphysema 12 yrs |
|
