Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 In a message dated 8/17/2005 9:38:13 A.M. Eastern Daylight Time, renieburghardt@... writes: I have lost 10 pounds since May, but feel I hould have lost more. Hi Renie, Losing ten lbs is great, much better than gaining 10 lbs. Keep on doing the same thing and you'll reach your weight goal. hugs Eunice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Tina You've been gone but in our thoughts and hearts. So glad to read all the good news. You have so much going on and just take the best care of yourself you can, but update us when the time allows. > > I know it's been a while since I posted anything, but I sure do miss > everyone! I've been reading posts the last couple of days to try to > catch up with everyone. I hope I didn't miss anything significant. > I pray for everyone and I appreciate your thoughts and prayers as > well. To catch you up with me, I would like to let you all know I AM > FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with > my coordinator the last few days to get everything finalized. I had > to come off of my blood thinners for seven days before I could be > listed and finish up some other minor things, like dental work. But > it is finally done. My LAS is 37, which is kind of low, but I am > Number 2 on the list in my Region. The person ahead of me is a lot > worse than I am, but has a completely different set of circumstances > that will make his/her match complicated. A tissue type expert was > able to eliminate some of my antibodies that were likely not to cause > problems with a donor. I believe I have 7 unacceptable antigens that > have to match in order to be an acceptable donor. I have arranged my > pre-transplant air ambulance flight transportation through Med Air. > They will fly an air ambulance jet into Lorain County Regional > Airport, where I will meet them, and then they will fly me to > Pittsburgh and provide transportation from the airport to the > hospital, if the call ever comes. It is a three hour drive to UPMC > from where I am in Ohio, and the transplant team has allowed me 4 > hours to arrive at the hospital once I receive the call. So. they > have requested that I arrange the flight instead. I am scared, but I > know this is the only choice I have to extend my life. I have also > decided to move back in with my mother. She is glad that I will be > there and she can keep an eye on me. I hated to give up my place, > but this is for the best. My divorce is well under way, and you can > imagine what that is like. The hardest part is Kaleb has been with > his father most of the summer. He is supposed to be coming home at > the end of July. I miss him so much! But he is having a good time > with his dad. I have been " dating " someone who is well aware of all > of my " baggage " . His name is Steve and he is wonderful. He does not > have any children, but he is great with Kaleb. He is a program > manager with a local metal fabrication manufacturer in Norwalk, > Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. > I have been to several of the drag races this summer and have got to > have a hands on experience in something I never thought I would have > an interest. It's been a lot of fun. I drive his truck and trailer > (with the race car on it) to and from the race tracks. I have met > some amazing people. > We never know what God has in store for us, but I was always > confident that His plan, and my trials, have always been for a reason > not meant for me to understand. > I continue to struggle with the ups and downs of this disease, such > as oxygen needs and suppliers! But slowly and surely things have > worked out for me. I am in the process of switching over to liquid > oxygen and I am excited and nervous about that too. I have had teh > Home-fill oxygen concentrator for most of the summer, but it is not > working for me. And, the portable concentrator wasn't able to meet > my oxygen needs, so hopefully this system will do what I need it to > do! > (my daughter) and her new husband () have moved out of > our farm house because my soon-to-be ex-husband insisted they leave. > He had to " buy " her out of a life interest and they are now living > with 's grandmother for the time being. has been > accepted to the Board of Education's substitute teacher list for > middle and high school. She is anxiously awaiting the start of the > school year. Finally all her years of education, and her degree, > will be put to use! She continues to work full-time as a manager of > a gourmet coffee house at the Deep Creek Lake resort area. She is > doing very well there and she has been working there for 6 years. > The owner treats her very well. > Well, I know I have rambled on way too long tonite and I will close > for now. But, be assured, you will be seeing a lot more of me in the > coming weeks! I am so sorry for my long departure. > God Bless, > Tina > Ohio > IPF 04/07 PH 11/07 > Listed for transplant 07/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2008 Report Share Posted July 15, 2008 Tina, It's good news that you've been listed for TX. I hope the call comes soon! I'm starting the Ring Phone Ring!!! It worked for Gwynne and Judy! You will be in my thoughts as you go forward. Z fibriotic NSIP/05 Z 64, 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 Tina wrote: I know it's been a while since I posted anything, but I sure do miss everyone! I've been reading posts the last couple of days to try to catch up with everyone. I hope I didn't miss anything significant. I pray for everyone and I appreciate your thoughts and prayers as well. To catch you up with me, I would like to let you all know I AM FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with my coordinator the last few days to get everything finalized. I had to come off of my blood thinners for seven days before I could be listed and finish up some other minor things, like dental work. But it is finally done. My LAS is 37, which is kind of low, but I am Number 2 on the list in my Region. The person ahead of me is a lot worse than I am, but has a completely different set of circumstances that will make his/her match complicated. A tissue type expert was able to eliminate some of my antibodies that were likely not to cause problems with a donor. I believe I have 7 unacceptable antigens that have to match in order to be an acceptable donor. I have arranged my pre-transplant air ambulance flight transportation through Med Air. They will fly an air ambulance jet into Lorain County Regional Airport, where I will meet them, and then they will fly me to Pittsburgh and provide transportation from the airport to the hospital, if the call ever comes. It is a three hour drive to UPMC from where I am in Ohio, and the transplant team has allowed me 4 hours to arrive at the hospital once I receive the call. So. they have requested that I arrange the flight instead. I am scared, but I know this is the only choice I have to extend my life. I have also decided to move back in with my mother. She is glad that I will be there and she can keep an eye on me. I hated to give up my place, but this is for the best. My divorce is well under way, and you can imagine what that is like. The hardest part is Kaleb has been with his father most of the summer. He is supposed to be coming home at the end of July. I miss him so much! But he is having a good time with his dad. I have been "dating" someone who is well aware of all of my "baggage". His name is Steve and he is wonderful. He does not have any children, but he is great with Kaleb. He is a program manager with a local metal fabrication manufacturer in Norwalk, Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. I have been to several of the drag races this summer and have got to have a hands on experience in something I never thought I would have an interest. It's been a lot of fun. I drive his truck and trailer (with the race car on it) to and from the race tracks. I have met some amazing people. We never know what God has in store for us, but I was always confident that His plan, and my trials, have always been for a reason not meant for me to understand. I continue to struggle with the ups and downs of this disease, such as oxygen needs and suppliers! But slowly and surely things have worked out for me. I am in the process of switching over to liquid oxygen and I am excited and nervous about that too. I have had teh Home-fill oxygen concentrator for most of the summer, but it is not working for me. And, the portable concentrator wasn't able to meet my oxygen needs, so hopefully this system will do what I need it to do! (my daughter) and her new husband () have moved out of our farm house because my soon-to-be ex-husband insisted they leave. He had to "buy" her out of a life interest and they are now living with 's grandmother for the time being. has been accepted to the Board of Education's substitute teacher list for middle and high school. She is anxiously awaiting the start of the school year. Finally all her years of education, and her degree, will be put to use! She continues to work full-time as a manager of a gourmet coffee house at the Deep Creek Lake resort area. She is doing very well there and she has been working there for 6 years. The owner treats her very well. Well, I know I have rambled on way too long tonite and I will close for now. But, be assured, you will be seeing a lot more of me in the coming weeks! I am so sorry for my long departure. God Bless, Tina Ohio IPF 04/07 PH 11/07 Listed for transplant 07/08 No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.4.11/1553 - Release Date: 7/15/2008 5:48 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Hi Tina Fantastic news about the listing. Scary, but fantastic. You have to do what you have to do and if moving back in with your mother makes things easier then it's the best thing to do. And ooooooooooooo new boyfriend!!!! How exciting. Enjoy every minute. Lots of love Ze xx>> I know it's been a while since I posted anything, but I sure do miss > everyone! I've been reading posts the last couple of days to try to > catch up with everyone. I hope I didn't miss anything significant. > I pray for everyone and I appreciate your thoughts and prayers as > well. To catch you up with me, I would like to let you all know I AM > FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with > my coordinator the last few days to get everything finalized. I had > to come off of my blood thinners for seven days before I could be > listed and finish up some other minor things, like dental work. But > it is finally done. My LAS is 37, which is kind of low, but I am > Number 2 on the list in my Region. The person ahead of me is a lot > worse than I am, but has a completely different set of circumstances > that will make his/her match complicated. A tissue type expert was > able to eliminate some of my antibodies that were likely not to cause > problems with a donor. I believe I have 7 unacceptable antigens that > have to match in order to be an acceptable donor. I have arranged my > pre-transplant air ambulance flight transportation through Med Air. > They will fly an air ambulance jet into Lorain County Regional > Airport, where I will meet them, and then they will fly me to > Pittsburgh and provide transportation from the airport to the > hospital, if the call ever comes. It is a three hour drive to UPMC > from where I am in Ohio, and the transplant team has allowed me 4 > hours to arrive at the hospital once I receive the call. So. they > have requested that I arrange the flight instead. I am scared, but I > know this is the only choice I have to extend my life. I have also > decided to move back in with my mother. She is glad that I will be > there and she can keep an eye on me. I hated to give up my place, > but this is for the best. My divorce is well under way, and you can > imagine what that is like. The hardest part is Kaleb has been with > his father most of the summer. He is supposed to be coming home at > the end of July. I miss him so much! But he is having a good time > with his dad. I have been "dating" someone who is well aware of all > of my "baggage". His name is Steve and he is wonderful. He does not > have any children, but he is great with Kaleb. He is a program > manager with a local metal fabrication manufacturer in Norwalk, > Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. > I have been to several of the drag races this summer and have got to > have a hands on experience in something I never thought I would have > an interest. It's been a lot of fun. I drive his truck and trailer > (with the race car on it) to and from the race tracks. I have met > some amazing people. > We never know what God has in store for us, but I was always > confident that His plan, and my trials, have always been for a reason > not meant for me to understand. > I continue to struggle with the ups and downs of this disease, such > as oxygen needs and suppliers! But slowly and surely things have > worked out for me. I am in the process of switching over to liquid > oxygen and I am excited and nervous about that too. I have had teh > Home-fill oxygen concentrator for most of the summer, but it is not > working for me. And, the portable concentrator wasn't able to meet > my oxygen needs, so hopefully this system will do what I need it to > do! > (my daughter) and her new husband () have moved out of > our farm house because my soon-to-be ex-husband insisted they leave. > He had to "buy" her out of a life interest and they are now living > with 's grandmother for the time being. has been > accepted to the Board of Education's substitute teacher list for > middle and high school. She is anxiously awaiting the start of the > school year. Finally all her years of education, and her degree, > will be put to use! She continues to work full-time as a manager of > a gourmet coffee house at the Deep Creek Lake resort area. She is > doing very well there and she has been working there for 6 years. > The owner treats her very well. > Well, I know I have rambled on way too long tonite and I will close > for now. But, be assured, you will be seeing a lot more of me in the > coming weeks! I am so sorry for my long departure.> God Bless,> Tina> Ohio> IPF 04/07 PH 11/07> Listed for transplant 07/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Tina, This is such exciting news and I'm really overwhelmed with your description of how you've handled everything. You sound so calm and matter of fact. You amaze me. I don't know if I could string an coherent sentence together in your shoes. I know it's tough but I'm glad you're moving back with your Mom during this period. I think pulling together all the support you can will be important. I'm glad that Kaleb is having a good summer though I know you'll be glad when he's home. Congratulations to on getting to teach this fall! Make sure Steve takes good care of you! Hope he knows how special you are! You deserve that!! Love, Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive hello everyone! I know it's been a while since I posted anything, but I sure do miss everyone! I've been reading posts the last couple of days to try to catch up with everyone. I hope I didn't miss anything significant. I pray for everyone and I appreciate your thoughts and prayers as well. To catch you up with me, I would like to let you all know I AM FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with my coordinator the last few days to get everything finalized. I had to come off of my blood thinners for seven days before I could be listed and finish up some other minor things, like dental work. But it is finally done. My LAS is 37, which is kind of low, but I am Number 2 on the list in my Region. The person ahead of me is a lot worse than I am, but has a completely different set of circumstances that will make his/her match complicated. A tissue type expert was able to eliminate some of my antibodies that were likely not to cause problems with a donor. I believe I have 7 unacceptable antigens that have to match in order to be an acceptable donor. I have arranged my pre-transplant air ambulance flight transportation through Med Air. They will fly an air ambulance jet into Lorain County Regional Airport, where I will meet them, and then they will fly me to Pittsburgh and provide transportation from the airport to the hospital, if the call ever comes. It is a three hour drive to UPMC from where I am in Ohio, and the transplant team has allowed me 4 hours to arrive at the hospital once I receive the call. So. they have requested that I arrange the flight instead. I am scared, but I know this is the only choice I have to extend my life. I have also decided to move back in with my mother. She is glad that I will be there and she can keep an eye on me. I hated to give up my place, but this is for the best. My divorce is well under way, and you can imagine what that is like. The hardest part is Kaleb has been with his father most of the summer. He is supposed to be coming home at the end of July. I miss him so much! But he is having a good time with his dad. I have been "dating" someone who is well aware of all of my "baggage". His name is Steve and he is wonderful. He does not have any children, but he is great with Kaleb. He is a program manager with a local metal fabrication manufacturer in Norwalk, Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. I have been to several of the drag races this summer and have got to have a hands on experience in something I never thought I would have an interest. It's been a lot of fun. I drive his truck and trailer (with the race car on it) to and from the race tracks. I have met some amazing people. We never know what God has in store for us, but I was always confident that His plan, and my trials, have always been for a reason not meant for me to understand. I continue to struggle with the ups and downs of this disease, such as oxygen needs and suppliers! But slowly and surely things have worked out for me. I am in the process of switching over to liquid oxygen and I am excited and nervous about that too. I have had teh Home-fill oxygen concentrator for most of the summer, but it is not working for me. And, the portable concentrator wasn't able to meet my oxygen needs, so hopefully this system will do what I need it to do! (my daughter) and her new husband () have moved out of our farm house because my soon-to-be ex-husband insisted they leave. He had to "buy" her out of a life interest and they are now living with 's grandmother for the time being. has been accepted to the Board of Education's substitute teacher list for middle and high school. She is anxiously awaiting the start of the school year. Finally all her years of education, and her degree, will be put to use! She continues to work full-time as a manager of a gourmet coffee house at the Deep Creek Lake resort area. She is doing very well there and she has been working there for 6 years. The owner treats her very well. Well, I know I have rambled on way too long tonite and I will close for now. But, be assured, you will be seeing a lot more of me in the coming weeks! I am so sorry for my long departure.God Bless,TinaOhioIPF 04/07 PH 11/07Listed for transplant 07/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 tina as someone still struggling with getting my bmi down in order to have transplant evaluation and knowing you had the same problem i would appreciate some info on how you handled the weight loss. i was at 35 and needed to get to 30 before they would start evaluation and believe they need me to be 25 before listing. i'm very stable and have much time on my hand but am very interested in that part of your journey and of course any tips. i'm very glad everything seems to be flowing and that you have a lovely new 'fella'. it must make such a difference to have someone who wants to be around you despite your medical situation after that horrible hubby. being at your mum's seems the best place to be if a transplant is imminent, especially for kaleb. lovely to hear how things have been for you. may uip 0606 glasgow, scotland > > I know it's been a while since I posted anything, but I sure do miss > everyone! I've been reading posts the last couple of days to try to > catch up with everyone. I hope I didn't miss anything significant. > I pray for everyone and I appreciate your thoughts and prayers as > well. To catch you up with me, I would like to let you all know I AM > FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with > my coordinator the last few days to get everything finalized. I had > to come off of my blood thinners for seven days before I could be > listed and finish up some other minor things, like dental work. But > it is finally done. My LAS is 37, which is kind of low, but I am > Number 2 on the list in my Region. The person ahead of me is a lot > worse than I am, but has a completely different set of circumstances > that will make his/her match complicated. A tissue type expert was > able to eliminate some of my antibodies that were likely not to cause > problems with a donor. I believe I have 7 unacceptable antigens that > have to match in order to be an acceptable donor. I have arranged my > pre-transplant air ambulance flight transportation through Med Air. > They will fly an air ambulance jet into Lorain County Regional > Airport, where I will meet them, and then they will fly me to > Pittsburgh and provide transportation from the airport to the > hospital, if the call ever comes. It is a three hour drive to UPMC > from where I am in Ohio, and the transplant team has allowed me 4 > hours to arrive at the hospital once I receive the call. So. they > have requested that I arrange the flight instead. I am scared, but I > know this is the only choice I have to extend my life. I have also > decided to move back in with my mother. She is glad that I will be > there and she can keep an eye on me. I hated to give up my place, > but this is for the best. My divorce is well under way, and you can > imagine what that is like. The hardest part is Kaleb has been with > his father most of the summer. He is supposed to be coming home at > the end of July. I miss him so much! But he is having a good time > with his dad. I have been " dating " someone who is well aware of all > of my " baggage " . His name is Steve and he is wonderful. He does not > have any children, but he is great with Kaleb. He is a program > manager with a local metal fabrication manufacturer in Norwalk, > Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. > I have been to several of the drag races this summer and have got to > have a hands on experience in something I never thought I would have > an interest. It's been a lot of fun. I drive his truck and trailer > (with the race car on it) to and from the race tracks. I have met > some amazing people. > We never know what God has in store for us, but I was always > confident that His plan, and my trials, have always been for a reason > not meant for me to understand. > I continue to struggle with the ups and downs of this disease, such > as oxygen needs and suppliers! But slowly and surely things have > worked out for me. I am in the process of switching over to liquid > oxygen and I am excited and nervous about that too. I have had teh > Home-fill oxygen concentrator for most of the summer, but it is not > working for me. And, the portable concentrator wasn't able to meet > my oxygen needs, so hopefully this system will do what I need it to > do! > (my daughter) and her new husband () have moved out of > our farm house because my soon-to-be ex-husband insisted they leave. > He had to " buy " her out of a life interest and they are now living > with 's grandmother for the time being. has been > accepted to the Board of Education's substitute teacher list for > middle and high school. She is anxiously awaiting the start of the > school year. Finally all her years of education, and her degree, > will be put to use! She continues to work full-time as a manager of > a gourmet coffee house at the Deep Creek Lake resort area. She is > doing very well there and she has been working there for 6 years. > The owner treats her very well. > Well, I know I have rambled on way too long tonite and I will close > for now. But, be assured, you will be seeing a lot more of me in the > coming weeks! I am so sorry for my long departure. > God Bless, > Tina > Ohio > IPF 04/07 PH 11/07 > Listed for transplant 07/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Tina! What wonderful news I read from you this morning... I'm so happy for you and Kaleb. You're dating a fun guy, moving back in with mom for care for you and Kaleb, sounds like good news to me. Getting "the call" must have been so exciting. "It's a go Tina!" I know your concerns about Ebby but Kaleb will soon be home and you can rest easier then. Over and over and over... I'm so happy for you. Love ya. ~sher Don't fret about tomorrow, God is already there! hello everyone! I know it's been a while since I posted anything, but I sure do miss everyone! I've been reading posts the last couple of days to try to catch up with everyone. I hope I didn't miss anything significant. I pray for everyone and I appreciate your thoughts and prayers as well. To catch you up with me, I would like to let you all know I AM FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with my coordinator the last few days to get everything finalized. I had to come off of my blood thinners for seven days before I could be listed and finish up some other minor things, like dental work. But it is finally done. My LAS is 37, which is kind of low, but I am Number 2 on the list in my Region. The person ahead of me is a lot worse than I am, but has a completely different set of circumstances that will make his/her match complicated. A tissue type expert was able to eliminate some of my antibodies that were likely not to cause problems with a donor. I believe I have 7 unacceptable antigens that have to match in order to be an acceptable donor. I have arranged my pre-transplant air ambulance flight transportation through Med Air. They will fly an air ambulance jet into Lorain County Regional Airport, where I will meet them, and then they will fly me to Pittsburgh and provide transportation from the airport to the hospital, if the call ever comes. It is a three hour drive to UPMC from where I am in Ohio, and the transplant team has allowed me 4 hours to arrive at the hospital once I receive the call. So. they have requested that I arrange the flight instead. I am scared, but I know this is the only choice I have to extend my life. I have also decided to move back in with my mother. She is glad that I will be there and she can keep an eye on me. I hated to give up my place, but this is for the best. My divorce is well under way, and you can imagine what that is like. The hardest part is Kaleb has been with his father most of the summer. He is supposed to be coming home at the end of July. I miss him so much! But he is having a good time with his dad. I have been "dating" someone who is well aware of all of my "baggage". His name is Steve and he is wonderful. He does not have any children, but he is great with Kaleb. He is a program manager with a local metal fabrication manufacturer in Norwalk, Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. I have been to several of the drag races this summer and have got to have a hands on experience in something I never thought I would have an interest. It's been a lot of fun. I drive his truck and trailer (with the race car on it) to and from the race tracks. I have met some amazing people. We never know what God has in store for us, but I was always confident that His plan, and my trials, have always been for a reason not meant for me to understand. I continue to struggle with the ups and downs of this disease, such as oxygen needs and suppliers! But slowly and surely things have worked out for me. I am in the process of switching over to liquid oxygen and I am excited and nervous about that too. I have had teh Home-fill oxygen concentrator for most of the summer, but it is not working for me. And, the portable concentrator wasn't able to meet my oxygen needs, so hopefully this system will do what I need it to do! (my daughter) and her new husband () have moved out of our farm house because my soon-to-be ex-husband insisted they leave. He had to "buy" her out of a life interest and they are now living with 's grandmother for the time being. has been accepted to the Board of Education's substitute teacher list for middle and high school. She is anxiously awaiting the start of the school year. Finally all her years of education, and her degree, will be put to use! She continues to work full-time as a manager of a gourmet coffee house at the Deep Creek Lake resort area. She is doing very well there and she has been working there for 6 years. The owner treats her very well. Well, I know I have rambled on way too long tonite and I will close for now. But, be assured, you will be seeing a lot more of me in the coming weeks! I am so sorry for my long departure.God Bless,TinaOhioIPF 04/07 PH 11/07Listed for transplant 07/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Tina, So glad that you are on the list. I will keep you in my prayers. I hope the days pass quickly until Kaleb is home with you where he belongs. Have someone let us know if and when the call comes. We will wait then to hear from you personally! You are so blessed to have your mama. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> I know it's been a while since I posted anything, but I sure do miss > everyone! I've been reading posts the last couple of days to try to > catch up with everyone. I hope I didn't miss anything significant. > I pray for everyone and I appreciate your thoughts and prayers as > well. To catch you up with me, I would like to let you all know I AM > FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with > my coordinator the last few days to get everything finalized. I had > to come off of my blood thinners for seven days before I could be > listed and finish up some other minor things, like dental work. But > it is finally done. My LAS is 37, which is kind of low, but I am > Number 2 on the list in my Region. The person ahead of me is a lot > worse than I am, but has a completely different set of circumstances > that will make his/her match complicated. A tissue type expert was > able to eliminate some of my antibodies that were likely not to cause > problems with a donor. I believe I have 7 unacceptable antigens that > have to match in order to be an acceptable donor. I have arranged my > pre-transplant air ambulance flight transportation through Med Air. > They will fly an air ambulance jet into Lorain County Regional > Airport, where I will meet them, and then they will fly me to > Pittsburgh and provide transportation from the airport to the > hospital, if the call ever comes. It is a three hour drive to UPMC > from where I am in Ohio, and the transplant team has allowed me 4 > hours to arrive at the hospital once I receive the call. So. they > have requested that I arrange the flight instead. I am scared, but I > know this is the only choice I have to extend my life. I have also > decided to move back in with my mother. She is glad that I will be > there and she can keep an eye on me. I hated to give up my place, > but this is for the best. My divorce is well under way, and you can > imagine what that is like. The hardest part is Kaleb has been with > his father most of the summer. He is supposed to be coming home at > the end of July. I miss him so much! But he is having a good time > with his dad. I have been "dating" someone who is well aware of all > of my "baggage". His name is Steve and he is wonderful. He does not > have any children, but he is great with Kaleb. He is a program > manager with a local metal fabrication manufacturer in Norwalk, > Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. > I have been to several of the drag races this summer and have got to > have a hands on experience in something I never thought I would have > an interest. It's been a lot of fun. I drive his truck and trailer > (with the race car on it) to and from the race tracks. I have met > some amazing people. > We never know what God has in store for us, but I was always > confident that His plan, and my trials, have always been for a reason > not meant for me to understand. > I continue to struggle with the ups and downs of this disease, such > as oxygen needs and suppliers! But slowly and surely things have > worked out for me. I am in the process of switching over to liquid > oxygen and I am excited and nervous about that too. I have had teh > Home-fill oxygen concentrator for most of the summer, but it is not > working for me. And, the portable concentrator wasn't able to meet > my oxygen needs, so hopefully this system will do what I need it to > do! > (my daughter) and her new husband () have moved out of > our farm house because my soon-to-be ex-husband insisted they leave. > He had to "buy" her out of a life interest and they are now living > with 's grandmother for the time being. has been > accepted to the Board of Education's substitute teacher list for > middle and high school. She is anxiously awaiting the start of the > school year. Finally all her years of education, and her degree, > will be put to use! She continues to work full-time as a manager of > a gourmet coffee house at the Deep Creek Lake resort area. She is > doing very well there and she has been working there for 6 years. > The owner treats her very well. > Well, I know I have rambled on way too long tonite and I will close > for now. But, be assured, you will be seeing a lot more of me in the > coming weeks! I am so sorry for my long departure.> God Bless,> Tina> Ohio> IPF 04/07 PH 11/07> Listed for transplant 07/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 Tina, I'm glad to hear your on the transplant list! I hope the call comes soon. The days will pass very fast and Kaleb will be with you. IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 Re: hello everyone! Tina, So glad that you are on the list. I will keep you in my prayers. I hope the days pass quickly until Kaleb is home with you where he belongs. Have someone let us know if and when the call comes. We will wait then to hear from you personally! You are so blessed to have your mama. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> I know it's been a while since I posted anything, but I sure do miss > everyone! I've been reading posts the last couple of days to try to > catch up with everyone. I hope I didn't miss anything significant. > I pray for everyone and I appreciate your thoughts and prayers as > well. To catch you up with me, I would like to let you all know I AM > FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with > my coordinator the last few days to get everything finalized. I had > to come off of my blood thinners for seven days before I could be > listed and finish up some other minor things, like dental work. But > it is finally done. My LAS is 37, which is kind of low, but I am > Number 2 on the list in my Region. The person ahead of me is a lot > worse than I am, but has a completely different set of circumstances > that will make his/her match complicated. A tissue type expert was > able to eliminate some of my antibodies that were likely not to cause > problems with a donor. I believe I have 7 unacceptable antigens that > have to match in order to be an acceptable donor. I have arranged my > pre-transplant air ambulance flight transportation through Med Air. > They will fly an air ambulance jet into Lorain County Regional > Airport, where I will meet them, and then they will fly me to > Pittsburgh and provide transportation from the airport to the > hospital, if the call ever comes. It is a three hour drive to UPMC > from where I am in Ohio, and the transplant team has allowed me 4 > hours to arrive at the hospital once I receive the call. So. they > have requested that I arrange the flight instead. I am scared, but I > know this is the only choice I have to extend my life. I have also > decided to move back in with my mother. She is glad that I will be > there and she can keep an eye on me. I hated to give up my place, > but this is for the best. My divorce is well under way, and you can > imagine what that is like. The hardest part is Kaleb has been with > his father most of the summer. He is supposed to be coming home at > the end of July. I miss him so much! But he is having a good time > with his dad. I have been "dating" someone who is well aware of all > of my "baggage". His name is Steve and he is wonderful. He does not > have any children, but he is great with Kaleb. He is a program > manager with a local metal fabrication manufacturer in Norwalk, > Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. > I have been to several of the drag races this summer and have got to > have a hands on experience in something I never thought I would have > an interest. It's been a lot of fun. I drive his truck and trailer > (with the race car on it) to and from the race tracks. I have met > some amazing people. > We never know what God has in store for us, but I was always > confident that His plan, and my trials, have always been for a reason > not meant for me to understand. > I continue to struggle with the ups and downs of this disease, such > as oxygen needs and suppliers! But slowly and surely things have > worked out for me. I am in the process of switching over to liquid > oxygen and I am excited and nervous about that too. I have had teh > Home-fill oxygen concentrator for most of the summer, but it is not > working for me. And, the portable concentrator wasn't able to meet > my oxygen needs, so hopefully this system will do what I need it to > do! > (my daughter) and her new husband () have moved out of > our farm house because my soon-to-be ex-husband insisted they leave. > He had to "buy" her out of a life interest and they are now living > with 's grandmother for the time being. has been > accepted to the Board of Education's substitute teacher list for > middle and high school. She is anxiously awaiting the start of the > school year. Finally all her years of education, and her degree, > will be put to use! She continues to work full-time as a manager of > a gourmet coffee house at the Deep Creek Lake resort area. She is > doing very well there and she has been working there for 6 years. > The owner treats her very well. > Well, I know I have rambled on way too long tonite and I will close > for now. But, be assured, you will be seeing a lot more of me in the > coming weeks! I am so sorry for my long departure.> God Bless,> Tina> Ohio> IPF 04/07 PH 11/07> Listed for transplant 07/08> Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 Tina! How Awesome! You go girl ! you have everyones prayers in your pocket! With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~ To: Breathe-Support From: bofus@...Date: Wed, 16 Jul 2008 07:34:18 -0700Subject: Re: hello everyone! Tina! What wonderful news I read from you this morning... I'm so happy for you and Kaleb. You're dating a fun guy, moving back in with mom for care for you and Kaleb, sounds like good news to me. Getting "the call" must have been so exciting. "It's a go Tina!" I know your concerns about Ebby but Kaleb will soon be home and you can rest easier then. Over and over and over... I'm so happy for you. Love ya. ~sher Don't fret about tomorrow, God is already there! hello everyone! I know it's been a while since I posted anything, but I sure do miss everyone! I've been reading posts the last couple of days to try to catch up with everyone. I hope I didn't miss anything significant. I pray for everyone and I appreciate your thoughts and prayers as well. To catch you up with me, I would like to let you all know I AM FINALLY LISTED FOR LUNG TRANSPLANT! I have been working closely with my coordinator the last few days to get everything finalized. I had to come off of my blood thinners for seven days before I could be listed and finish up some other minor things, like dental work. But it is finally done. My LAS is 37, which is kind of low, but I am Number 2 on the list in my Region. The person ahead of me is a lot worse than I am, but has a completely different set of circumstances that will make his/her match complicated. A tissue type expert was able to eliminate some of my antibodies that were likely not to cause problems with a donor. I believe I have 7 unacceptable antigens that have to match in order to be an acceptable donor. I have arranged my pre-transplant air ambulance flight transportation through Med Air. They will fly an air ambulance jet into Lorain County Regional Airport, where I will meet them, and then they will fly me to Pittsburgh and provide transportation from the airport to the hospital, if the call ever comes. It is a three hour drive to UPMC from where I am in Ohio, and the transplant team has allowed me 4 hours to arrive at the hospital once I receive the call. So. they have requested that I arrange the flight instead. I am scared, but I know this is the only choice I have to extend my life. I have also decided to move back in with my mother. She is glad that I will be there and she can keep an eye on me. I hated to give up my place, but this is for the best. My divorce is well under way, and you can imagine what that is like. The hardest part is Kaleb has been with his father most of the summer. He is supposed to be coming home at the end of July. I miss him so much! But he is having a good time with his dad. I have been "dating" someone who is well aware of all of my "baggage". His name is Steve and he is wonderful. He does not have any children, but he is great with Kaleb. He is a program manager with a local metal fabrication manufacturer in Norwalk, Ohio. He also is a Pro Stock Drag Racer and races a '68 Barracuda. I have been to several of the drag races this summer and have got to have a hands on experience in something I never thought I would have an interest. It's been a lot of fun. I drive his truck and trailer (with the race car on it) to and from the race tracks. I have met some amazing people. We never know what God has in store for us, but I was always confident that His plan, and my trials, have always been for a reason not meant for me to understand. I continue to struggle with the ups and downs of this disease, such as oxygen needs and suppliers! But slowly and surely things have worked out for me. I am in the process of switching over to liquid oxygen and I am excited and nervous about that too. I have had teh Home-fill oxygen concentrator for most of the summer, but it is not working for me. And, the portable concentrator wasn't able to meet my oxygen needs, so hopefully this system will do what I need it to do! (my daughter) and her new husband () have moved out of our farm house because my soon-to-be ex-husband insisted they leave. He had to "buy" her out of a life interest and they are now living with 's grandmother for the time being. has been accepted to the Board of Education's substitute teacher list for middle and high school. She is anxiously awaiting the start of the school year. Finally all her years of education, and her degree, will be put to use! She continues to work full-time as a manager of a gourmet coffee house at the Deep Creek Lake resort area. She is doing very well there and she has been working there for 6 years. The owner treats her very well. Well, I know I have rambled on way too long tonite and I will close for now. But, be assured, you will be seeing a lot more of me in the coming weeks! I am so sorry for my long departure.God Bless,TinaOhioIPF 04/07 PH 11/07Listed for transplant 07/08 With Windows Live for mobile, your contacts travel with you. Connect on the go. Quote Link to comment Share on other sites More sharing options...
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