for those who have yet to decide on transplant

Georgiagirl

New member
Hello everyone, <br>I have found all of your input very helpful and interesting. I am not saying that I am ruling a transplant out completely, I am just leaning to the side of "no" more than "yes". Thank you to everyone's responses. As far as my health, I am more moderate than any other "category". Currently, my fev1 is between 35-40 and my fvc is between 40-45 (my goal is 50 but my highest was 49). I have not required oxygen at night for about 20 years, but find that I have more asthmatic symptoms as I get older that are more so than anything from the CF. I appreciate all of your responses and hope the best for each of you.<br>
 

Georgiagirl

New member
Hello everyone, <br>I have found all of your input very helpful and interesting. I am not saying that I am ruling a transplant out completely, I am just leaning to the side of "no" more than "yes". Thank you to everyone's responses. As far as my health, I am more moderate than any other "category". Currently, my fev1 is between 35-40 and my fvc is between 40-45 (my goal is 50 but my highest was 49). I have not required oxygen at night for about 20 years, but find that I have more asthmatic symptoms as I get older that are more so than anything from the CF. I appreciate all of your responses and hope the best for each of you.<br>
 

dream2live

New member
<P>I am in the same predicament.  I don't know if I want to trade one problem for another.  You still have to take all this anti-rejection drugs, which lowers your immune system and u still have to be careful of being around sick ppl.</P>
<P> </P>
<P>I am 43 Delta F508 and now totally resistant to every antibiotic.  I just don't know and I would love to hear some feedback as well.  I'm in limbo about this.  I have made my peace with it.</P>
<P> </P>
<P>Rhonda</P>
 

dream2live

New member
<P>I am in the same predicament. I don't know if I want to trade one problem for another. You still have to take all this anti-rejection drugs, which lowers your immune system and u still have to be careful of being around sick ppl.</P>
<P></P>
<P>I am 43 Delta F508 and now totally resistant to every antibiotic. I just don't know and I would love to hear some feedback as well. I'm in limbo about this. I have made my peace with it.</P>
<P></P>
<P>Rhonda</P>
 

dream2live

New member
<P>I am in the same predicament. I don't know if I want to trade one problem for another. You still have to take all this anti-rejection drugs, which lowers your immune system and u still have to be careful of being around sick ppl.</P>
<P></P>
<P>I am 43 Delta F508 and now totally resistant to every antibiotic. I just don't know and I would love to hear some feedback as well. I'm in limbo about this. I have made my peace with it.</P>
<P></P>
<P>Rhonda<BR></P>
 
C

cgcheatham

Guest
<P><FONT size=2 face=verdana>Georgia Girl:   As has been stated previously, you do trade one set of problems for another.  To transplant or not is a personal decision.  After my husband's lung collasped for the second time, oxygen 24/7 @ 4 ltr., he decided to be "available" for transplant.  He left it in God's hands to do what was best for him....to heal him by transplant or by death.  He received his transplant over 15 years ago at Emory.  He was first CF to be transplanted there.  There was no support group, etc. in place for us at that time.  He was still working on vehicles, pulling the oxygen tank around with him.  I think his biggest incentive to live was our daughter.  He had always wondered if he would see her graduate, get married, have children, etc.   Her last year of high school he was transplanted.  Very difficult time for us all.  When transplanted the doctors said his lungs dripped through their fingers when they tried to remove them...he only had about a month left with those lungs.  My last words to him before surgery was "if you don't wake up here, I'll see you one day on the other side."   Eleven hours later he awoke in ICU and gave me a thumbs up.  He said he would never forget that first glorious breath.  The first year was tough.  He was in the hospital more than not, mainly due to antibiotics and relating ailments from those (cdiff colitis,etc).</FONT></P>
<P>He has met his donor's mother.  They speak to different groups on organ donation and receiving organs.  He walked our daughter down the aisle when she married.  He was there when our first granddaughter was born.  Our daughter has now become a certified respiratory therapist and is working on RRT.   She is due with our second grandchild next April.</P>
<P>He has gained weight.  In fact the doctor has told him twice now to watch his weight--somehing he never thought he would hear.   He is diabetic (from CF) and has survived colon cancer & chemo (3 yrs post).   He works over 40+ hrs per week.   We have had 15 more years together and have wonderful memories to hang on to.  Every day is a gift to enjoy!</P>
<P>God bless you and your family in the days ahead.</P>
<P> </P>
<P>Donald and his older sister were diagnosed at age 14yr & 18yr respectively.  She passed away 1 year later in 1968.  He is now 58 years old.  Received bilateral lung transplant 1997.</P>
 
C

cgcheatham

Guest
<P><FONT size=2 face=verdana>Georgia Girl: As has been stated previously, you do trade one set of problems for another. To transplant or not is a personal decision. After my husband's lung collasped for the second time, oxygen 24/7 @ 4 ltr., he decided to be "available" for transplant. He left it in God's hands to do what was best for him....to heal him by transplant or by death. He received his transplant over 15 years ago at Emory. He was first CF to be transplanted there. There was no support group, etc. in place for us at that time. He was still working on vehicles, pulling the oxygen tank around with him. I think his biggest incentive to live was our daughter. He had always wondered if he would see her graduate, get married, have children, etc. Her last year of high school he was transplanted. Very difficult time for us all. When transplanted the doctors said his lungs dripped through their fingers when they tried to remove them...he only had about a month left with those lungs. My last words to him before surgery was "if you don't wake up here, I'll see you one day on the other side." Eleven hours later he awoke in ICU and gave me a thumbs up. He said he would never forget that first glorious breath. The first year was tough. He was in the hospital more than not, mainly due to antibiotics and relating ailments from those (cdiff colitis,etc).</FONT></P>
<P>He has met his donor's mother. They speak to different groups on organ donation and receivingorgans. He walked our daughter down the aisle when she married. He was there when our first granddaughter was born. Our daughter has now become a certified respiratory therapist and is working on RRT. She is due with our second grandchild next April.</P>
<P>He has gained weight. In fact the doctor has told him twice now to watch his weight--somehing he never thought he would hear. He is diabetic (from CF) and has survived colon cancer & chemo (3 yrs post). He works over 40+ hrs per week. We have had 15 more years together and have wonderful memories to hang on to. Every day is a gift to enjoy!</P>
<P>God blessyou and your family in the days ahead.</P>
<P></P>
<P>Donald and his older sister were diagnosed at age 14yr & 18yr respectively. She passed away 1 year later in 1968. He is now 58 years old. Received bilateral lung transplant 1997.</P>
 
C

cgcheatham

Guest
<P><BR><FONT size=2 face=verdana>Georgia Girl: As has been stated previously, you do trade one set of problems for another. To transplant or not is a personal decision. After my husband's lung collasped for the second time, oxygen 24/7 @ 4 ltr., he decided to be "available" for transplant. He left it in God's hands to do what was best for him....to heal him by transplant or by death. He received his transplant over 15 years ago at Emory. He was first CF to be transplanted there. There was no support group, etc. in place for us at that time. He was still working on vehicles, pulling the oxygen tank around with him. I think his biggest incentive to live was our daughter. He had always wondered if he would see her graduate, get married, have children, etc. Her last year of high school he was transplanted. Very difficult time for us all. When transplanted the doctors said his lungs dripped through their fingers when they tried to remove them...he only had about a month left with those lungs. My last words to him before surgery was "if you don't wake up here, I'll see you one day on the other side." Eleven hours later he awoke in ICU and gave me a thumbs up. He said he would never forget that first glorious breath. The first year was tough. He was in the hospital more than not, mainly due to antibiotics and relating ailments from those (cdiff colitis,etc).</FONT></P>
<P>He has met his donor's mother. They speak to different groups on organ donation and receivingorgans. He walked our daughter down the aisle when she married. He was there when our first granddaughter was born. Our daughter has now become a certified respiratory therapist and is working on RRT. She is due with our second grandchild next April.</P>
<P>He has gained weight. In fact the doctor has told him twice now to watch his weight--somehing he never thought he would hear. He is diabetic (from CF) and has survived colon cancer & chemo (3 yrs post). He works over 40+ hrs per week. We have had 15 more years together and have wonderful memories to hang on to. Every day is a gift to enjoy!</P>
<P>God blessyou and your family in the days ahead.</P>
<P></P>
<P>Donald and his older sister were diagnosed at age 14yr & 18yr respectively. She passed away 1 year later in 1968. He is now 58 years old. Received bilateral lung transplant 1997.</P>
 
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