Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Congratulations Gwynne, I hope that phone rings just as soon as you get rested. Thats wonderful news. Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Hi friends,The bottom line from my trip to San : I waslisted there Friday late afternoon. So now I'm officiallya double-lister.I've been in bed ever since, worn out but getting stronger.We didn't get back until nearly 8:00 Friday night, after avery long day. One good thing is that my sats did fineon the small plane, with no need to increase my 02. Itmeant the world to me to have my son, sister-in-law,and dad with me for the trip. They pampered me.University Hospital at UT Health Science Center in San does fewer transplants than UTSW in Dallas, butthe wait list only has 8 people on it. At both places, I'mnow at the top of the B pos list.As with most everything, there's a trade-off. In S.A. theyuse "expanded protocols" in their transplantations, meaningthat, for example, they'll use the lungs of someone older ormaybe less than 100% perfect lungs, and sometimes they txpatients who are sicker than they'd choose in Dallas. Thatmeans their survival rates aren't as high, but at least I knowwhy. Dallas is more conservative and VERY picky. Obviously,I'd opt for tx to happen in Dallas, but everyone feels thatI'm sick enough at this point that the focus needs to be ongetting me a lung, however and wherever. They warned meabout the possibility of being called there for a "dry run",which I was already aware of. yuk. But my bag's packed.I liked the doctor - Dr. Angel - VERY much. I also metone of the surgeons and liked him a lot too. I felt verycomfortable with them. I was very impressed with the efficiencyand caring nature of my nurse coordinator, and the socialworker. The transplant center was cheerful, with many greatphotos on the walls of people who've undergone tx. Theteam there was very eager to furnish information and answerquestions. I could only do 2 laps of the 6MW before droppingto 84 (starting out at 6L), when she made me stop. They took17 vials of blood. Dr. Angel, the director of the center, saidthey'd bypass the normal channels of going through thecommittee and list me right away, based on his decision. Theycontacted my insurance company and UNOS, and it's a donedeal.I didn't sleep well the night before all this, nor the night I gothome. It all seems more real, urgent, and scary now. But lastnight I slept fine, and I know it's still the right decision for me.Thanks for the wishes and prayers. I'm in God's hands.Dawn and Ann,Welcome to our air family. It would be so cool if Dawn and Dianecould meet! I'm very sorry about your diagnoses, but you're ina good place, as Joyce says, to "learn and to lean". Do your-selves a favor and keep good records, get yourselves a pulseoximeter, and if oxygen is prescribed, USE IT. You'll no doubthave a million questions. Make your doctors answer them, andyou can always ask them here as well. We're here for you.,Wow, Flowerpot and its surroundings sound divine! You hookedme with the first sentence. I'm awfully glad your daughter is allright after her encounter with a snake... OMG, how scary. Howgreat that you've got Ahli to enjoy until school starts. Whatterrific memories for all of you!!!!!Hugs and blessings,Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Gwynne So glad to hear from you. Glad you're a double lister and you're right about some of the trade offs. Personally, I'd be thrilled to have healthy lungs from someone my age (of course I'm much much older than you) and many doctors are criticizing the age criteria being used saying older lungs for an older person are fine. Now as to lungs in poorer condition, thats another question. I found some interesting notes that state their rates in graft failure are overstated due to clerical error. Also, an incredible note that because they are aggressive 94.7% of their patients receive a transplant within six months as opposed to a nationwide average of 47.8%. Makes me even more optimistic now that you have a second location as an option. Obviously, everything would be better if it could happen at UTSW but San is certainly an excellent backup. Also, their patient survival rates on transplants is only 6% lower than UTSW (which is statistically considered not significant) and better than so many other facilities. Note how much they deal with PF also compared to most centers. So, it looks to me like the odds of you receiving a lung or lungs just jumped dramatically with the two centers combined. I'm even more optimistic than ever. And I'm a firm believer you're going to be the poster child for successful transplants with Misha right there beside you. General Comments: - Graft failure rate: Although reported as 'not statistically significant' the reported observed graft failure of 68.41 includes three recipients (n= 19) for whom graft failure was incorrectly recorded in the raw data (differences of 6m, 9m and 2m). A fourth pt was noted to be a re-transplant with graft failure. This patient's transplanted lung was not removed- he received a second single lung transplant. There was no graft failure. Three of these four cases were incorrectly counted as graft failures within year one. With an (n) of only 19 these clerical errors significantly impact our reported graft failure rates. This data has been corrected through UNET but the corrected data will not be incorporated prior to this SRTR publication. - Overall graft and patient survival rates. We are hopeful the future SRTR reports will stratify the transplants that occur by LAS. Our data will clearly demonstrate that we transplant a sicker patient population than many centers. In addition, we transplant an increased percentage of patients with pulmonary fibrosis (52.6% compared to 40.0 nationally.) However, the expected outcomes alone may not adequately predict mortality in our patient population because although the variables utilized to calculate expected outcomes broad and sound, there are endless variables that impact outcomes that are nearly impossible to objectively analyze: such as generalized deterioration and physical stamina, extensive co- morbidity such as PVD versus minor PVD, history of multiple thoracic procedures. - Two statistics demonstrates our centers aggressive approach to offering life-saving lung transplantation to those in dire need. 94.7 % of our patients have received a transplant within six months compared to only 47.8% nationally yielding a higher transplant rate (3.70 compared to an expected rate of 1.67.) > > Hi friends, > The bottom line from my trip to San : I was > listed there Friday late afternoon. So now I'm officially > a double-lister. > I've been in bed ever since, worn out but getting stronger. > We didn't get back until nearly 8:00 Friday night, after a > very long day. One good thing is that my sats did fine > on the small plane, with no need to increase my 02. It > meant the world to me to have my son, sister-in-law, > and dad with me for the trip. They pampered me. > University Hospital at UT Health Science Center in San > does fewer transplants than UTSW in Dallas, but > the wait list only has 8 people on it. At both places, I'm > now at the top of the B pos list. > > As with most everything, there's a trade-off. In S.A. they > use " expanded protocols " in their transplantations, meaning > that, for example, they'll use the lungs of someone older or > maybe less than 100% perfect lungs, and sometimes they tx > patients who are sicker than they'd choose in Dallas. That > means their survival rates aren't as high, but at least I know > why. Dallas is more conservative and VERY picky. Obviously, > I'd opt for tx to happen in Dallas, but everyone feels that > I'm sick enough at this point that the focus needs to be on > getting me a lung, however and wherever. They warned me > about the possibility of being called there for a " dry run " , > which I was already aware of. yuk. But my bag's packed. > > I liked the doctor - Dr. Angel - VERY much. I also met > one of the surgeons and liked him a lot too. I felt very > comfortable with them. I was very impressed with the efficiency > and caring nature of my nurse coordinator, and the social > worker. The transplant center was cheerful, with many great > photos on the walls of people who've undergone tx. The > team there was very eager to furnish information and answer > questions. I could only do 2 laps of the 6MW before dropping > to 84 (starting out at 6L), when she made me stop. They took > 17 vials of blood. Dr. Angel, the director of the center, said > they'd bypass the normal channels of going through the > committee and list me right away, based on his decision. They > contacted my insurance company and UNOS, and it's a done > deal. > > I didn't sleep well the night before all this, nor the night I got > home. It all seems more real, urgent, and scary now. But last > night I slept fine, and I know it's still the right decision for me. > Thanks for the wishes and prayers. I'm in God's hands. > > Dawn and Ann, > Welcome to our air family. It would be so cool if Dawn and Diane > could meet! I'm very sorry about your diagnoses, but you're in > a good place, as Joyce says, to " learn and to lean " . Do your- > selves a favor and keep good records, get yourselves a pulse > oximeter, and if oxygen is prescribed, USE IT. You'll no doubt > have a million questions. Make your doctors answer them, and > you can always ask them here as well. We're here for you. > > , > Wow, Flowerpot and its surroundings sound divine! You hooked > me with the first sentence. I'm awfully glad your daughter is all > right after her encounter with a snake... OMG, how scary. How > great that you've got Ahli to enjoy until school starts. What > terrific memories for all of you!!!!! > > Hugs and blessings, > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Congradulations! I pray the strategy works and you're posting about your new lungs soon! Hermansky-Pudlak Syndrome/PF 06 www.heatherkirkwood.blogspot.com > > Hi friends, > The bottom line from my trip to San : I was > listed there Friday late afternoon. So now I'm officially > a double-lister. > I've been in bed ever since, worn out but getting stronger. > We didn't get back until nearly 8:00 Friday night, after a > very long day. One good thing is that my sats did fine > on the small plane, with no need to increase my 02. It > meant the world to me to have my son, sister-in-law, > and dad with me for the trip. They pampered me. > University Hospital at UT Health Science Center in San > does fewer transplants than UTSW in Dallas, but > the wait list only has 8 people on it. At both places, I'm > now at the top of the B pos list. > > As with most everything, there's a trade-off. In S.A. they > use " expanded protocols " in their transplantations, meaning > that, for example, they'll use the lungs of someone older or > maybe less than 100% perfect lungs, and sometimes they tx > patients who are sicker than they'd choose in Dallas. That > means their survival rates aren't as high, but at least I know > why. Dallas is more conservative and VERY picky. Obviously, > I'd opt for tx to happen in Dallas, but everyone feels that > I'm sick enough at this point that the focus needs to be on > getting me a lung, however and wherever. They warned me > about the possibility of being called there for a " dry run " , > which I was already aware of. yuk. But my bag's packed. > > I liked the doctor - Dr. Angel - VERY much. I also met > one of the surgeons and liked him a lot too. I felt very > comfortable with them. I was very impressed with the efficiency > and caring nature of my nurse coordinator, and the social > worker. The transplant center was cheerful, with many great > photos on the walls of people who've undergone tx. The > team there was very eager to furnish information and answer > questions. I could only do 2 laps of the 6MW before dropping > to 84 (starting out at 6L), when she made me stop. They took > 17 vials of blood. Dr. Angel, the director of the center, said > they'd bypass the normal channels of going through the > committee and list me right away, based on his decision. They > contacted my insurance company and UNOS, and it's a done > deal. > > I didn't sleep well the night before all this, nor the night I got > home. It all seems more real, urgent, and scary now. But last > night I slept fine, and I know it's still the right decision for me. > Thanks for the wishes and prayers. I'm in God's hands. > > Dawn and Ann, > Welcome to our air family. It would be so cool if Dawn and Diane > could meet! I'm very sorry about your diagnoses, but you're in > a good place, as Joyce says, to " learn and to lean " . Do your- > selves a favor and keep good records, get yourselves a pulse > oximeter, and if oxygen is prescribed, USE IT. You'll no doubt > have a million questions. Make your doctors answer them, and > you can always ask them here as well. We're here for you. > > , > Wow, Flowerpot and its surroundings sound divine! You hooked > me with the first sentence. I'm awfully glad your daughter is all > right after her encounter with a snake... OMG, how scary. How > great that you've got Ahli to enjoy until school starts. What > terrific memories for all of you!!!!! > > Hugs and blessings, > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Gwynne, After reading all the posts I found yours!!!We were all concerned about your trip to S.A. I assume that this listing is a good thing!! I still cannot get my head around the entire idea of TX at this time for me. I will be praying that your future journey through the transplant protocols goes smoothly. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Gwynne Keyland wrote: Hi friends, The bottom line from my trip to San : I was listed there Friday late afternoon. So now I'm officially a double-lister. I've been in bed ever since, worn out but getting stronger. We didn't get back until nearly 8:00 Friday night, after a very long day. One good thing is that my sats did fine on the small plane, with no need to increase my 02. It meant the world to me to have my son, sister-in-law, and dad with me for the trip. They pampered me. University Hospital at UT Health Science Center in San does fewer transplants than UTSW in Dallas, but the wait list only has 8 people on it. At both places, I'm now at the top of the B pos list. As with most everything, there's a trade-off. In S.A. they use "expanded protocols" in their transplantations, meaning that, for example, they'll use the lungs of someone older or maybe less than 100% perfect lungs, and sometimes they tx patients who are sicker than they'd choose in Dallas. That means their survival rates aren't as high, but at least I know why. Dallas is more conservative and VERY picky. Obviously, I'd opt for tx to happen in Dallas, but everyone feels that I'm sick enough at this point that the focus needs to be on getting me a lung, however and wherever. They warned me about the possibility of being called there for a "dry run", which I was already aware of. yuk. But my bag's packed. I liked the doctor - Dr. Angel - VERY much. I also met one of the surgeons and liked him a lot too. I felt very comfortable with them. I was very impressed with the efficiency and caring nature of my nurse coordinator, and the social worker. The transplant center was cheerful, with many great photos on the walls of people who've undergone tx. The team there was very eager to furnish information and answer questions. I could only do 2 laps of the 6MW before dropping to 84 (starting out at 6L), when she made me stop. They took 17 vials of blood. Dr. Angel, the director of the center, said they'd bypass the normal channels of going through the committee and list me right away, based on his decision. They contacted my insurance company and UNOS, and it's a done deal. I didn't sleep well the night before all this, nor the night I got home. It all seems more real, urgent, and scary now. But last night I slept fine, and I know it's still the right decision for me. Thanks for the wishes and prayers. I'm in God's hands. Dawn and Ann, Welcome to our air family. It would be so cool if Dawn and Diane could meet! I'm very sorry about your diagnoses, but you're in a good place, as Joyce says, to "learn and to lean". Do your- selves a favor and keep good records, get yourselves a pulse oximeter, and if oxygen is prescribed, USE IT. You'll no doubt have a million questions. Make your doctors answer them, and you can always ask them here as well. We're here for you. , Wow, Flowerpot and its surroundings sound divine! You hooked me with the first sentence. I'm awfully glad your daughter is all right after her encounter with a snake... OMG, how scary. How great that you've got Ahli to enjoy until school starts. What terrific memories for all of you!!!!! Hugs and blessings, Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.19/1256 - Release Date: 2/2/2008 1:50 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Wow, Gwynne, I wish you the very best of luck Sending you much love and strength Love Ze xxx>> Hi friends,> The bottom line from my trip to San : I was> listed there Friday late afternoon. So now I'm officially> a double-lister.> I've been in bed ever since, worn out but getting stronger.> We didn't get back until nearly 8:00 Friday night, after a> very long day. One good thing is that my sats did fine> on the small plane, with no need to increase my 02. It> meant the world to me to have my son, sister-in-law,> and dad with me for the trip. They pampered me.> University Hospital at UT Health Science Center in San> does fewer transplants than UTSW in Dallas, but> the wait list only has 8 people on it. At both places, I'm> now at the top of the B pos list.> > As with most everything, there's a trade-off. In S.A. they> use "expanded protocols" in their transplantations, meaning> that, for example, they'll use the lungs of someone older or> maybe less than 100% perfect lungs, and sometimes they tx> patients who are sicker than they'd choose in Dallas. That> means their survival rates aren't as high, but at least I know> why. Dallas is more conservative and VERY picky. Obviously,> I'd opt for tx to happen in Dallas, but everyone feels that> I'm sick enough at this point that the focus needs to be on> getting me a lung, however and wherever. They warned me> about the possibility of being called there for a "dry run",> which I was already aware of. yuk. But my bag's packed.> > I liked the doctor - Dr. Angel - VERY much. I also met> one of the surgeons and liked him a lot too. I felt very> comfortable with them. I was very impressed with the efficiency> and caring nature of my nurse coordinator, and the social> worker. The transplant center was cheerful, with many great> photos on the walls of people who've undergone tx. The> team there was very eager to furnish information and answer> questions. I could only do 2 laps of the 6MW before dropping> to 84 (starting out at 6L), when she made me stop. They took> 17 vials of blood. Dr. Angel, the director of the center, said> they'd bypass the normal channels of going through the> committee and list me right away, based on his decision. They> contacted my insurance company and UNOS, and it's a done> deal.> > I didn't sleep well the night before all this, nor the night I got> home. It all seems more real, urgent, and scary now. But last> night I slept fine, and I know it's still the right decision for me.> Thanks for the wishes and prayers. I'm in God's hands.> > Dawn and Ann,> Welcome to our air family. It would be so cool if Dawn and Diane> could meet! I'm very sorry about your diagnoses, but you're in> a good place, as Joyce says, to "learn and to lean". Do your-> selves a favor and keep good records, get yourselves a pulse> oximeter, and if oxygen is prescribed, USE IT. You'll no doubt> have a million questions. Make your doctors answer them, and> you can always ask them here as well. We're here for you.> > ,> Wow, Flowerpot and its surroundings sound divine! You hooked> me with the first sentence. I'm awfully glad your daughter is all> right after her encounter with a snake... OMG, how scary. How> great that you've got Ahli to enjoy until school starts. What> terrific memories for all of you!!!!!> > Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Gwynne your in mmy thoughts and prayers! Sending you loads of love! Sandie > > Hi friends, > The bottom line from my trip to San : I was > listed there Friday late afternoon. So now I'm officially > a double-lister. > I've been in bed ever since, worn out but getting stronger. > We didn't get back until nearly 8:00 Friday night, after a > very long day. One good thing is that my sats did fine > on the small plane, with no need to increase my 02. It > meant the world to me to have my son, sister-in-law, > and dad with me for the trip. They pampered me. > University Hospital at UT Health Science Center in San > does fewer transplants than UTSW in Dallas, but > the wait list only has 8 people on it. At both places, I'm > now at the top of the B pos list. > > As with most everything, there's a trade-off. In S.A. they > use " expanded protocols " in their transplantations, meaning > that, for example, they'll use the lungs of someone older or > maybe less than 100% perfect lungs, and sometimes they tx > patients who are sicker than they'd choose in Dallas. That > means their survival rates aren't as high, but at least I know > why. Dallas is more conservative and VERY picky. Obviously, > I'd opt for tx to happen in Dallas, but everyone feels that > I'm sick enough at this point that the focus needs to be on > getting me a lung, however and wherever. They warned me > about the possibility of being called there for a " dry run " , > which I was already aware of. yuk. But my bag's packed. > > I liked the doctor - Dr. Angel - VERY much. I also met > one of the surgeons and liked him a lot too. I felt very > comfortable with them. I was very impressed with the efficiency > and caring nature of my nurse coordinator, and the social > worker. The transplant center was cheerful, with many great > photos on the walls of people who've undergone tx. The > team there was very eager to furnish information and answer > questions. I could only do 2 laps of the 6MW before dropping > to 84 (starting out at 6L), when she made me stop. They took > 17 vials of blood. Dr. Angel, the director of the center, said > they'd bypass the normal channels of going through the > committee and list me right away, based on his decision. They > contacted my insurance company and UNOS, and it's a done > deal. > > I didn't sleep well the night before all this, nor the night I got > home. It all seems more real, urgent, and scary now. But last > night I slept fine, and I know it's still the right decision for me. > Thanks for the wishes and prayers. I'm in God's hands. > > Dawn and Ann, > Welcome to our air family. It would be so cool if Dawn and Diane > could meet! I'm very sorry about your diagnoses, but you're in > a good place, as Joyce says, to " learn and to lean " . Do your- > selves a favor and keep good records, get yourselves a pulse > oximeter, and if oxygen is prescribed, USE IT. You'll no doubt > have a million questions. Make your doctors answer them, and > you can always ask them here as well. We're here for you. > > , > Wow, Flowerpot and its surroundings sound divine! You hooked > me with the first sentence. I'm awfully glad your daughter is all > right after her encounter with a snake... OMG, how scary. How > great that you've got Ahli to enjoy until school starts. What > terrific memories for all of you!!!!! > > Hugs and blessings, > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Hi Gwynne. Nice to 'meet' you! OH my goodness, I am definitely adding you to my prayers! I didn't realize you were waiting for a lung (are there others on this list also waiting for lungs??) My heart is hurting for you, but you sound so brave! ) Do you know how much longer you'll be waiting before the transplant will take place? Do you need one lung or both?? Please excuse all the questions! May I also inquire as to how old you are? Thank you for your welcome. I am so please to have found this group! What exactly does a pulse oximeter do? Is it the little finger thingie that measures your oxygen that the hospitals use?? Unfortunately, we don't have health insurance (ugh!) so we have to pay for all our meds. and medical equipment ourselves. I'm sure I'm not the only one in this boat, though. I am fortunate, though, that in Canada all our Dr's. visits and medical tests are paid for by the gov't., so that much I am thankful for! ) Dawn in N.B. > > Hi friends, > The bottom line from my trip to San : I was > listed there Friday late afternoon. So now I'm officially > a double-lister. > I've been in bed ever since, worn out but getting stronger. > We didn't get back until nearly 8:00 Friday night, after a > very long day. One good thing is that my sats did fine > on the small plane, with no need to increase my 02. It > meant the world to me to have my son, sister-in-law, > and dad with me for the trip. They pampered me. > University Hospital at UT Health Science Center in San > does fewer transplants than UTSW in Dallas, but > the wait list only has 8 people on it. At both places, I'm > now at the top of the B pos list. > > As with most everything, there's a trade-off. In S.A. they > use " expanded protocols " in their transplantations, meaning > that, for example, they'll use the lungs of someone older or > maybe less than 100% perfect lungs, and sometimes they tx > patients who are sicker than they'd choose in Dallas. That > means their survival rates aren't as high, but at least I know > why. Dallas is more conservative and VERY picky. Obviously, > I'd opt for tx to happen in Dallas, but everyone feels that > I'm sick enough at this point that the focus needs to be on > getting me a lung, however and wherever. They warned me > about the possibility of being called there for a " dry run " , > which I was already aware of. yuk. But my bag's packed. > > I liked the doctor - Dr. Angel - VERY much. I also met > one of the surgeons and liked him a lot too. I felt very > comfortable with them. I was very impressed with the efficiency > and caring nature of my nurse coordinator, and the social > worker. The transplant center was cheerful, with many great > photos on the walls of people who've undergone tx. The > team there was very eager to furnish information and answer > questions. I could only do 2 laps of the 6MW before dropping > to 84 (starting out at 6L), when she made me stop. They took > 17 vials of blood. Dr. Angel, the director of the center, said > they'd bypass the normal channels of going through the > committee and list me right away, based on his decision. They > contacted my insurance company and UNOS, and it's a done > deal. > > I didn't sleep well the night before all this, nor the night I got > home. It all seems more real, urgent, and scary now. But last > night I slept fine, and I know it's still the right decision for me. > Thanks for the wishes and prayers. I'm in God's hands. > > Dawn and Ann, > Welcome to our air family. It would be so cool if Dawn and Diane > could meet! I'm very sorry about your diagnoses, but you're in > a good place, as Joyce says, to " learn and to lean " . Do your- > selves a favor and keep good records, get yourselves a pulse > oximeter, and if oxygen is prescribed, USE IT. You'll no doubt > have a million questions. Make your doctors answer them, and > you can always ask them here as well. We're here for you. > > , > Wow, Flowerpot and its surroundings sound divine! You hooked > me with the first sentence. I'm awfully glad your daughter is all > right after her encounter with a snake... OMG, how scary. How > great that you've got Ahli to enjoy until school starts. What > terrific memories for all of you!!!!! > > Hugs and blessings, > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 yes it's the little finger thingieBRETTHi Gwynne. Nice to 'meet' you! OH my goodness, I am definitelyadding you to my prayers! I didn't realize you were waiting for alung (are there others on this list also waiting for lungs??) Myheart is hurting for you, but you sound so brave! ) Do you knowhow much longer you'll be waiting before the transplant will takeplace? Do you need one lung or both?? Please excuse all thequestions! May I also inquire as to how old you are?Thank you for your welcome. I am so please to have found this group!What exactly does a pulse oximeter do? Is it the little fingerthingie that measures your oxygen that the hospitals use?? Unfortunately, we don't have health insurance (ugh!) so we have to payfor all our meds. and medical equipment ourselves. I'm sure I'm notthe only one in this boat, though. I am fortunate, though, that inCanada all our Dr's. visits and medical tests are paid for by thegov't., so that much I am thankful for! )Dawn in N.B.>> Hi friends,> The bottom line from my trip to San : I was> listed there Friday late afternoon. So now I'm officially> a double-lister.> I've been in bed ever since, worn out but getting stronger.> We didn't get back until nearly 8:00 Friday night, after a> very long day. One good thing is that my sats did fine> on the small plane, with no need to increase my 02. It> meant the world to me to have my son, sister-in-law,> and dad with me for the trip. They pampered me.> University Hospital at UT Health Science Center in San> does fewer transplants than UTSW in Dallas, but> the wait list only has 8 people on it. At both places, I'm> now at the top of the B pos list.> > As with most everything, there's a trade-off. In S.A. they> use "expanded protocols" in their transplantations, meaning> that, for example, they'll use the lungs of someone older or> maybe less than 100% perfect lungs, and sometimes they tx> patients who are sicker than they'd choose in Dallas. That> means their survival rates aren't as high, but at least I know> why. Dallas is more conservative and VERY picky. Obviously,> I'd opt for tx to happen in Dallas, but everyone feels that> I'm sick enough at this point that the focus needs to be on> getting me a lung, however and wherever. They warned me> about the possibility of being called there for a "dry run",> which I was already aware of. yuk. But my bag's packed.> > I liked the doctor - Dr. Angel - VERY much. I also met> one of the surgeons and liked him a lot too. I felt very> comfortable with them. I was very impressed with the efficiency> and caring nature of my nurse coordinator, and the social> worker. The transplant center was cheerful, with many great> photos on the walls of people who've undergone tx. The> team there was very eager to furnish information and answer> questions. I could only do 2 laps of the 6MW before dropping> to 84 (starting out at 6L), when she made me stop. They took> 17 vials of blood. Dr. Angel, the director of the center, said> they'd bypass the normal channels of going through the> committee and list me right away, based on his decision. They> contacted my insurance company and UNOS, and it's a done> deal.> > I didn't sleep well the night before all this, nor the night I got> home. It all seems more real, urgent, and scary now. But last> night I slept fine, and I know it's still the right decision for me.> Thanks for the wishes and prayers. I'm in God's hands.> > Dawn and Ann,> Welcome to our air family. It would be so cool if Dawn and Diane> could meet! I'm very sorry about your diagnoses, but you're in> a good place, as Joyce says, to "learn and to lean". Do your-> selves a favor and keep good records, get yourselves a pulse> oximeter, and if oxygen is prescribed, USE IT. You'll no doubt> have a million questions. Make your doctors answer them, and> you can always ask them here as well. We're here for you.> > ,> Wow, Flowerpot and its surroundings sound divine! You hooked> me with the first sentence. I'm awfully glad your daughter is all> right after her encounter with a snake... OMG, how scary. How> great that you've got Ahli to enjoy until school starts. What> terrific memories for all of you!!!!!> > Hugs and blessings,> Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas> brett bowserbrett@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Good to know....thanks. Dawn in N.B. > > > > > > Hi friends, > > > The bottom line from my trip to San : I was > > > listed there Friday late afternoon. So now I'm officially > > > a double-lister. > > > I've been in bed ever since, worn out but getting stronger. > > > We didn't get back until nearly 8:00 Friday night, after a > > > very long day. One good thing is that my sats did fine > > > on the small plane, with no need to increase my 02. It > > > meant the world to me to have my son, sister-in-law, > > > and dad with me for the trip. They pampered me. > > > University Hospital at UT Health Science Center in San > > > does fewer transplants than UTSW in Dallas, but > > > the wait list only has 8 people on it. At both places, I'm > > > now at the top of the B pos list. > > > > > > As with most everything, there's a trade-off. In S.A. they > > > use " expanded protocols " in their transplantations, meaning > > > that, for example, they'll use the lungs of someone older or > > > maybe less than 100% perfect lungs, and sometimes they tx > > > patients who are sicker than they'd choose in Dallas. That > > > means their survival rates aren't as high, but at least I know > > > why. Dallas is more conservative and VERY picky. Obviously, > > > I'd opt for tx to happen in Dallas, but everyone feels that > > > I'm sick enough at this point that the focus needs to be on > > > getting me a lung, however and wherever. They warned me > > > about the possibility of being called there for a " dry run " , > > > which I was already aware of. yuk. But my bag's packed. > > > > > > I liked the doctor - Dr. Angel - VERY much. I also met > > > one of the surgeons and liked him a lot too. I felt very > > > comfortable with them. I was very impressed with the efficiency > > > and caring nature of my nurse coordinator, and the social > > > worker. The transplant center was cheerful, with many great > > > photos on the walls of people who've undergone tx. The > > > team there was very eager to furnish information and answer > > > questions. I could only do 2 laps of the 6MW before dropping > > > to 84 (starting out at 6L), when she made me stop. They took > > > 17 vials of blood. Dr. Angel, the director of the center, said > > > they'd bypass the normal channels of going through the > > > committee and list me right away, based on his decision. They > > > contacted my insurance company and UNOS, and it's a done > > > deal. > > > > > > I didn't sleep well the night before all this, nor the night I got > > > home. It all seems more real, urgent, and scary now. But last > > > night I slept fine, and I know it's still the right decision for me. > > > Thanks for the wishes and prayers. I'm in God's hands. > > > > > > Dawn and Ann, > > > Welcome to our air family. It would be so cool if Dawn and Diane > > > could meet! I'm very sorry about your diagnoses, but you're in > > > a good place, as Joyce says, to " learn and to lean " . Do your- > > > selves a favor and keep good records, get yourselves a pulse > > > oximeter, and if oxygen is prescribed, USE IT. You'll no doubt > > > have a million questions. Make your doctors answer them, and > > > you can always ask them here as well. We're here for you. > > > > > > , > > > Wow, Flowerpot and its surroundings sound divine! You hooked > > > me with the first sentence. I'm awfully glad your daughter is all > > > right after her encounter with a snake... OMG, how scary. How > > > great that you've got Ahli to enjoy until school starts. What > > > terrific memories for all of you!!!!! > > > > > > Hugs and blessings, > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > brett bowser > brett@... > Quote Link to comment Share on other sites More sharing options...
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