It's been just over a month!

S

Shoshanna

Guest
Jerry,

How very wonderful!!!!
I'm sure each day will bring a new and wonderful surprise. I think of new lungs in that way; each day they'll show us something new that we couldn't do before like laugh or sing or sleep!!!!
Please keep us posted as you progress.
I don't really know your story? Where were you tx? How bad was your CF b/f tx?
Would you fill me in?
 

Diane

New member
Jerry,
I am glad to see an update from you , especially a good one <img src="i/expressions/face-icon-small-smile.gif" border="0"> It is insipriing to hear how well you are doing! One day you will get that very well deserved laugh! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Diane

New member
Jerry,
I am glad to see an update from you , especially a good one <img src="i/expressions/face-icon-small-smile.gif" border="0"> It is insipriing to hear how well you are doing! One day you will get that very well deserved laugh! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Diane

New member
Jerry,
I am glad to see an update from you , especially a good one <img src="i/expressions/face-icon-small-smile.gif" border="0"> It is insipriing to hear how well you are doing! One day you will get that very well deserved laugh! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Kelli

New member
Yeah laugh in the face of CF, that is freaking terrific!!!!

You WILL laugh and I hope it is the best laugh you will ever have in your whole life. I'm glad you are doing well. Please continue to do so!!!!
I'm rooting for YOU!
Yeah!!!!!

~Kelli
29 f. CF
 

Kelli

New member
Yeah laugh in the face of CF, that is freaking terrific!!!!

You WILL laugh and I hope it is the best laugh you will ever have in your whole life. I'm glad you are doing well. Please continue to do so!!!!
I'm rooting for YOU!
Yeah!!!!!

~Kelli
29 f. CF
 

Kelli

New member
Yeah laugh in the face of CF, that is freaking terrific!!!!

You WILL laugh and I hope it is the best laugh you will ever have in your whole life. I'm glad you are doing well. Please continue to do so!!!!
I'm rooting for YOU!
Yeah!!!!!

~Kelli
29 f. CF
 

Sreh

New member
Thanks for all the replies and support, means a lot =)<hr>

Shoshanna, I was transplanted down in Tucson, Az. At UMC, University Medical Center at University of Arizona. My doctor, Dr. Gandy, is awsome. Well... I have been on Oxygen, 2L, for about 6 years continous. In late Dec 06, I got sick was hosp for about 2 weeks. Was released and about 2 weeks later got sick again. Spent another 2 weeks in the hosp. Again was released and a week later rushed to ER for respritory distress. Treated with steroids and a few breathing treatments and sent home. My Pulmonary Specialist then decided to schedule an outpatient bronc to see what was going on inside. I asked for it to be an inpatient and he agreed. Turns out I would have stayed after the bronc either way. The bronc, according to my doc, pushed me over a little further. I was then on 4L continous O2. Still have severe distress spent another 2 weeks in the hosp undergoing more iv's antibiotics. Cultures came back on the bronc with 2 strains of Psuedonomis<sp> and a fungus, forgot the name of it off hand but have it writen down back at the appartment. I will get the name of if an post it Mon or Tues. After two weeks my insurance was pressuring my doctor to discharge me or send me to a nursing home. Well, he discharged me. I went home on 4L O2 and my breathing treatments. Albuterol, Tobi, Pulmazyme. Went from albuterol every 4 hours to every 1-2 hours just to releave my breathing. A couple days later I had a rushed appointment scheduled with my Tx team to have an eval done. Ran FEV1 and FVC, don't remember the numbers, but they said it would place me higher on the list. Four days later I got a call saying they had lungs for me, didn't know I was being placed at the top of the list. In the car down to Tucson, from Phoenix, I started having respratory distress again. Pulled over at the Firedepartment for assistance. They ran their little deal, by the time my breathing was relaxed again we didn't have time to make the drive down to the Tx hosp. My family asked if the ambulance could take me and they said we will do one better... They airlifted me down. I was 10 minutes late in arriving but my Tx team work hard and fast to prepare me for surgery... the lungs still hadn't arrived by this time. When I finally got on the table my Tx doc, Dr. Gandy, walked in and said your lungs are on the way. I said great, lets cut me open... Afterwards my doctor told my family if I didn't make it down there when I did, a couple hours longer I wouldn't be here now typing any of this. She couldn't believe how far I had declined in the four days since she saw me in clinic. before getting the call, I started having this sense/feeling I wasn't going to last through the end of march. Was really odd, first time I ever had that kind of sensation.
That is the short version of it.<hr>

Jazzy, I can't wait for that laugh to come my way!!! =)
 

Sreh

New member
Thanks for all the replies and support, means a lot =)<hr>

Shoshanna, I was transplanted down in Tucson, Az. At UMC, University Medical Center at University of Arizona. My doctor, Dr. Gandy, is awsome. Well... I have been on Oxygen, 2L, for about 6 years continous. In late Dec 06, I got sick was hosp for about 2 weeks. Was released and about 2 weeks later got sick again. Spent another 2 weeks in the hosp. Again was released and a week later rushed to ER for respritory distress. Treated with steroids and a few breathing treatments and sent home. My Pulmonary Specialist then decided to schedule an outpatient bronc to see what was going on inside. I asked for it to be an inpatient and he agreed. Turns out I would have stayed after the bronc either way. The bronc, according to my doc, pushed me over a little further. I was then on 4L continous O2. Still have severe distress spent another 2 weeks in the hosp undergoing more iv's antibiotics. Cultures came back on the bronc with 2 strains of Psuedonomis<sp> and a fungus, forgot the name of it off hand but have it writen down back at the appartment. I will get the name of if an post it Mon or Tues. After two weeks my insurance was pressuring my doctor to discharge me or send me to a nursing home. Well, he discharged me. I went home on 4L O2 and my breathing treatments. Albuterol, Tobi, Pulmazyme. Went from albuterol every 4 hours to every 1-2 hours just to releave my breathing. A couple days later I had a rushed appointment scheduled with my Tx team to have an eval done. Ran FEV1 and FVC, don't remember the numbers, but they said it would place me higher on the list. Four days later I got a call saying they had lungs for me, didn't know I was being placed at the top of the list. In the car down to Tucson, from Phoenix, I started having respratory distress again. Pulled over at the Firedepartment for assistance. They ran their little deal, by the time my breathing was relaxed again we didn't have time to make the drive down to the Tx hosp. My family asked if the ambulance could take me and they said we will do one better... They airlifted me down. I was 10 minutes late in arriving but my Tx team work hard and fast to prepare me for surgery... the lungs still hadn't arrived by this time. When I finally got on the table my Tx doc, Dr. Gandy, walked in and said your lungs are on the way. I said great, lets cut me open... Afterwards my doctor told my family if I didn't make it down there when I did, a couple hours longer I wouldn't be here now typing any of this. She couldn't believe how far I had declined in the four days since she saw me in clinic. before getting the call, I started having this sense/feeling I wasn't going to last through the end of march. Was really odd, first time I ever had that kind of sensation.
That is the short version of it.<hr>

Jazzy, I can't wait for that laugh to come my way!!! =)
 

Sreh

New member
Thanks for all the replies and support, means a lot =)<hr>

Shoshanna, I was transplanted down in Tucson, Az. At UMC, University Medical Center at University of Arizona. My doctor, Dr. Gandy, is awsome. Well... I have been on Oxygen, 2L, for about 6 years continous. In late Dec 06, I got sick was hosp for about 2 weeks. Was released and about 2 weeks later got sick again. Spent another 2 weeks in the hosp. Again was released and a week later rushed to ER for respritory distress. Treated with steroids and a few breathing treatments and sent home. My Pulmonary Specialist then decided to schedule an outpatient bronc to see what was going on inside. I asked for it to be an inpatient and he agreed. Turns out I would have stayed after the bronc either way. The bronc, according to my doc, pushed me over a little further. I was then on 4L continous O2. Still have severe distress spent another 2 weeks in the hosp undergoing more iv's antibiotics. Cultures came back on the bronc with 2 strains of Psuedonomis<sp> and a fungus, forgot the name of it off hand but have it writen down back at the appartment. I will get the name of if an post it Mon or Tues. After two weeks my insurance was pressuring my doctor to discharge me or send me to a nursing home. Well, he discharged me. I went home on 4L O2 and my breathing treatments. Albuterol, Tobi, Pulmazyme. Went from albuterol every 4 hours to every 1-2 hours just to releave my breathing. A couple days later I had a rushed appointment scheduled with my Tx team to have an eval done. Ran FEV1 and FVC, don't remember the numbers, but they said it would place me higher on the list. Four days later I got a call saying they had lungs for me, didn't know I was being placed at the top of the list. In the car down to Tucson, from Phoenix, I started having respratory distress again. Pulled over at the Firedepartment for assistance. They ran their little deal, by the time my breathing was relaxed again we didn't have time to make the drive down to the Tx hosp. My family asked if the ambulance could take me and they said we will do one better... They airlifted me down. I was 10 minutes late in arriving but my Tx team work hard and fast to prepare me for surgery... the lungs still hadn't arrived by this time. When I finally got on the table my Tx doc, Dr. Gandy, walked in and said your lungs are on the way. I said great, lets cut me open... Afterwards my doctor told my family if I didn't make it down there when I did, a couple hours longer I wouldn't be here now typing any of this. She couldn't believe how far I had declined in the four days since she saw me in clinic. before getting the call, I started having this sense/feeling I wasn't going to last through the end of march. Was really odd, first time I ever had that kind of sensation.
That is the short version of it.<hr>

Jazzy, I can't wait for that laugh to come my way!!! =)
 

Jem

New member
Congrats Jerry! This is great news. <img src="i/expressions/heart.gif" border="0">

I hope it won't be too long before you are laughing.<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Jem

New member
Congrats Jerry! This is great news. <img src="i/expressions/heart.gif" border="0">

I hope it won't be too long before you are laughing.<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Jem

New member
Congrats Jerry! This is great news. <img src="i/expressions/heart.gif" border="0">

I hope it won't be too long before you are laughing.<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
Top