Question For Those Post-Transplant

S

shamrock

New member
Firstly, I could wring your doc's neck for saying something like "I think it will happen x" - he has no idea and by getting your hopes up like that, it's just not fair. Our system over here is different but if you got called in a month that would be EXTREMELY quick.

I'm 5"3 and B+ and I got done in 6months, which again, very fast for where I live. I'm not trying to tell you that you'll be ages waiting, but don't give up hope. Just keep "going with the plan", try as hard as you can to focus your life the way you did 3months ago when yu weren't on the list.

Don't, don't, don't lose hope. Find something to fill your time with - the less time spent doing 'nothing' the less time you have to worry <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shamrock

New member
Firstly, I could wring your doc's neck for saying something like "I think it will happen x" - he has no idea and by getting your hopes up like that, it's just not fair. Our system over here is different but if you got called in a month that would be EXTREMELY quick.

I'm 5"3 and B+ and I got done in 6months, which again, very fast for where I live. I'm not trying to tell you that you'll be ages waiting, but don't give up hope. Just keep "going with the plan", try as hard as you can to focus your life the way you did 3months ago when yu weren't on the list.

Don't, don't, don't lose hope. Find something to fill your time with - the less time spent doing 'nothing' the less time you have to worry <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shamrock

New member
Firstly, I could wring your doc's neck for saying something like "I think it will happen x" - he has no idea and by getting your hopes up like that, it's just not fair. Our system over here is different but if you got called in a month that would be EXTREMELY quick.

I'm 5"3 and B+ and I got done in 6months, which again, very fast for where I live. I'm not trying to tell you that you'll be ages waiting, but don't give up hope. Just keep "going with the plan", try as hard as you can to focus your life the way you did 3months ago when yu weren't on the list.

Don't, don't, don't lose hope. Find something to fill your time with - the less time spent doing 'nothing' the less time you have to worry <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shamrock

New member
Firstly, I could wring your doc's neck for saying something like "I think it will happen x" - he has no idea and by getting your hopes up like that, it's just not fair. Our system over here is different but if you got called in a month that would be EXTREMELY quick.

I'm 5"3 and B+ and I got done in 6months, which again, very fast for where I live. I'm not trying to tell you that you'll be ages waiting, but don't give up hope. Just keep "going with the plan", try as hard as you can to focus your life the way you did 3months ago when yu weren't on the list.

Don't, don't, don't lose hope. Find something to fill your time with - the less time spent doing 'nothing' the less time you have to worry <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

shamrock

New member
Firstly, I could wring your doc's neck for saying something like "I think it will happen x" - he has no idea and by getting your hopes up like that, it's just not fair. Our system over here is different but if you got called in a month that would be EXTREMELY quick.

I'm 5"3 and B+ and I got done in 6months, which again, very fast for where I live. I'm not trying to tell you that you'll be ages waiting, but don't give up hope. Just keep "going with the plan", try as hard as you can to focus your life the way you did 3months ago when yu weren't on the list.

Don't, don't, don't lose hope. Find something to fill your time with - the less time spent doing 'nothing' the less time you have to worry <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

coltsfan715

New member
Hey there,

I would listen to your body, mind, soul when it comes to the length of time you have to wait. I personally can't stand when people try to put a time limit on the length of life someone has left. I think some of it MAY be predictable BUT I think MORE of it is determined by the amount of fight you are ready to put into it. I am not saying that people that die don't fight I am just saying of you go into something saying I am going to see this through to the end then I think you have a better chance than saying I am going to see this through to 6 months .. hopefully you get my point.

I had alot of the emotions you described when I was going through the process of transplant. I became extremely depressed last year and felt completely hopeless because I did not know what to do for myself. All I could see at the time was impending doom and I didn't want to see that at all. I asked questions that were important to ME but decided that I did not want to or need to know EVERYTHING and that it may actually not be best for me to know everything. For that reason I left alot of questions unanswered in regards to transplant and possible problems I might deal with afterwards. I figured and figure that I will deal with those issues as they arise.

I think the docs giving you a time frame that is very short is somewhat unrealistic but also know that I did not wait as long as I thought I would either. They may just be looking at you thinking that you are in more need than most at this point and that when the opportunity comes you will be the first or one of the first they go too. It is hard to predict when it will happen.

I will be honest I stressed alot and had ALOT of anxiety before transplant. I worried about things that quite honestly I should not have worried about. I had to give my mind time to catch up with where I was physically and my health situation and all. I had more fear wrapped up in not getting called at the "right" time than anything. Meaning how would I know if I was TOO healthy or what if I wanted to wait and then I was too sick and so on. Then it hit me - it will happen when it is supposed to happen. I can't speculate on could haves, should haves and would haves. I stopped focusing on the waiting and decided that God would NOT let the transplant happen until I WAS ready mentally, physically spiritually .. everything. When it finally did happen then I should rest assured that it was the right time. At that point I stopped focusing on the waiting and just started trying to enjoy the days. I lost track of time again and stopped counting.

I was called within a few days of my realization. I am not saying that is going to be the case if you make that decision for yourself just saying how it happened for me. I let it go and stopped obsessing over it and it happened literally within a week. Then when I got called I panicked again and my first thought was .. is it "RIGHT"? Then I said ya know what say you accept the offer and that you will head to the hospital when it is time AND if it works out then it WAS right and if it doesn't then it wasn't right. I tried to keep reminding myself during that day (the day of my call) that whatever happened God was going to make sure that it was supposed to happen the way it did. If I had surgery and woke up with new lungs then it was my time if not then for whatever reason it was NOT right. Well I can honestly say that was one of my most relaxing days ever. I laughed and joked with friends and family and we had a good humor filled day at the hospital that afternoon and night. I had several delays but never really worried about things going off or getting cancelled. I figured ... it will happen the way it is supposed too happen.

I was very fortunate and I was transplanted with that first call after only waiting 6 weeks. Many and most people are not so lucky. I had some axiety that trickled over into my recovery but as my meds have changed and my doses have been lowered I have gotten better about things. I am not so anxiety ridden anymore. I do still stress about things but they are not so much health related issues but more my own personality issues - like preferring to stick to a schedule and not beign super spontaneous lol. Things like that.

I will let you go for now. I just wanted to share what helped me. Just accepting that I was commited to transplant and that it would happen when it was meant to happen. Once I started thinking about it and really looking at my beliefs I realized that when I was ready it would happen - no sooner (which was my big fear that mentally I would NOT be ready for the transition).

Another thing that helped take my mind off the worrying of what COULD go wrong was to make a list of things I would enjoy after transplant. I decided that to get my mind off the negative possibilities that I would add something positive to my "things I WILL do post transplant" list. I had so many anxiety attacks and stress filled days thinking about transplant that my positive list became extremely long extremely fast. It did help me though. It was one of the few things that was able to refocus my attention quickly and get me out of a panic attack. It made me smile and made me just in general a lot more fun to be around.

I hope you start feeling better mentally and that the call comes soon.

Love Linds
 
C

coltsfan715

New member
Hey there,

I would listen to your body, mind, soul when it comes to the length of time you have to wait. I personally can't stand when people try to put a time limit on the length of life someone has left. I think some of it MAY be predictable BUT I think MORE of it is determined by the amount of fight you are ready to put into it. I am not saying that people that die don't fight I am just saying of you go into something saying I am going to see this through to the end then I think you have a better chance than saying I am going to see this through to 6 months .. hopefully you get my point.

I had alot of the emotions you described when I was going through the process of transplant. I became extremely depressed last year and felt completely hopeless because I did not know what to do for myself. All I could see at the time was impending doom and I didn't want to see that at all. I asked questions that were important to ME but decided that I did not want to or need to know EVERYTHING and that it may actually not be best for me to know everything. For that reason I left alot of questions unanswered in regards to transplant and possible problems I might deal with afterwards. I figured and figure that I will deal with those issues as they arise.

I think the docs giving you a time frame that is very short is somewhat unrealistic but also know that I did not wait as long as I thought I would either. They may just be looking at you thinking that you are in more need than most at this point and that when the opportunity comes you will be the first or one of the first they go too. It is hard to predict when it will happen.

I will be honest I stressed alot and had ALOT of anxiety before transplant. I worried about things that quite honestly I should not have worried about. I had to give my mind time to catch up with where I was physically and my health situation and all. I had more fear wrapped up in not getting called at the "right" time than anything. Meaning how would I know if I was TOO healthy or what if I wanted to wait and then I was too sick and so on. Then it hit me - it will happen when it is supposed to happen. I can't speculate on could haves, should haves and would haves. I stopped focusing on the waiting and decided that God would NOT let the transplant happen until I WAS ready mentally, physically spiritually .. everything. When it finally did happen then I should rest assured that it was the right time. At that point I stopped focusing on the waiting and just started trying to enjoy the days. I lost track of time again and stopped counting.

I was called within a few days of my realization. I am not saying that is going to be the case if you make that decision for yourself just saying how it happened for me. I let it go and stopped obsessing over it and it happened literally within a week. Then when I got called I panicked again and my first thought was .. is it "RIGHT"? Then I said ya know what say you accept the offer and that you will head to the hospital when it is time AND if it works out then it WAS right and if it doesn't then it wasn't right. I tried to keep reminding myself during that day (the day of my call) that whatever happened God was going to make sure that it was supposed to happen the way it did. If I had surgery and woke up with new lungs then it was my time if not then for whatever reason it was NOT right. Well I can honestly say that was one of my most relaxing days ever. I laughed and joked with friends and family and we had a good humor filled day at the hospital that afternoon and night. I had several delays but never really worried about things going off or getting cancelled. I figured ... it will happen the way it is supposed too happen.

I was very fortunate and I was transplanted with that first call after only waiting 6 weeks. Many and most people are not so lucky. I had some axiety that trickled over into my recovery but as my meds have changed and my doses have been lowered I have gotten better about things. I am not so anxiety ridden anymore. I do still stress about things but they are not so much health related issues but more my own personality issues - like preferring to stick to a schedule and not beign super spontaneous lol. Things like that.

I will let you go for now. I just wanted to share what helped me. Just accepting that I was commited to transplant and that it would happen when it was meant to happen. Once I started thinking about it and really looking at my beliefs I realized that when I was ready it would happen - no sooner (which was my big fear that mentally I would NOT be ready for the transition).

Another thing that helped take my mind off the worrying of what COULD go wrong was to make a list of things I would enjoy after transplant. I decided that to get my mind off the negative possibilities that I would add something positive to my "things I WILL do post transplant" list. I had so many anxiety attacks and stress filled days thinking about transplant that my positive list became extremely long extremely fast. It did help me though. It was one of the few things that was able to refocus my attention quickly and get me out of a panic attack. It made me smile and made me just in general a lot more fun to be around.

I hope you start feeling better mentally and that the call comes soon.

Love Linds
 
C

coltsfan715

New member
Hey there,

I would listen to your body, mind, soul when it comes to the length of time you have to wait. I personally can't stand when people try to put a time limit on the length of life someone has left. I think some of it MAY be predictable BUT I think MORE of it is determined by the amount of fight you are ready to put into it. I am not saying that people that die don't fight I am just saying of you go into something saying I am going to see this through to the end then I think you have a better chance than saying I am going to see this through to 6 months .. hopefully you get my point.

I had alot of the emotions you described when I was going through the process of transplant. I became extremely depressed last year and felt completely hopeless because I did not know what to do for myself. All I could see at the time was impending doom and I didn't want to see that at all. I asked questions that were important to ME but decided that I did not want to or need to know EVERYTHING and that it may actually not be best for me to know everything. For that reason I left alot of questions unanswered in regards to transplant and possible problems I might deal with afterwards. I figured and figure that I will deal with those issues as they arise.

I think the docs giving you a time frame that is very short is somewhat unrealistic but also know that I did not wait as long as I thought I would either. They may just be looking at you thinking that you are in more need than most at this point and that when the opportunity comes you will be the first or one of the first they go too. It is hard to predict when it will happen.

I will be honest I stressed alot and had ALOT of anxiety before transplant. I worried about things that quite honestly I should not have worried about. I had to give my mind time to catch up with where I was physically and my health situation and all. I had more fear wrapped up in not getting called at the "right" time than anything. Meaning how would I know if I was TOO healthy or what if I wanted to wait and then I was too sick and so on. Then it hit me - it will happen when it is supposed to happen. I can't speculate on could haves, should haves and would haves. I stopped focusing on the waiting and decided that God would NOT let the transplant happen until I WAS ready mentally, physically spiritually .. everything. When it finally did happen then I should rest assured that it was the right time. At that point I stopped focusing on the waiting and just started trying to enjoy the days. I lost track of time again and stopped counting.

I was called within a few days of my realization. I am not saying that is going to be the case if you make that decision for yourself just saying how it happened for me. I let it go and stopped obsessing over it and it happened literally within a week. Then when I got called I panicked again and my first thought was .. is it "RIGHT"? Then I said ya know what say you accept the offer and that you will head to the hospital when it is time AND if it works out then it WAS right and if it doesn't then it wasn't right. I tried to keep reminding myself during that day (the day of my call) that whatever happened God was going to make sure that it was supposed to happen the way it did. If I had surgery and woke up with new lungs then it was my time if not then for whatever reason it was NOT right. Well I can honestly say that was one of my most relaxing days ever. I laughed and joked with friends and family and we had a good humor filled day at the hospital that afternoon and night. I had several delays but never really worried about things going off or getting cancelled. I figured ... it will happen the way it is supposed too happen.

I was very fortunate and I was transplanted with that first call after only waiting 6 weeks. Many and most people are not so lucky. I had some axiety that trickled over into my recovery but as my meds have changed and my doses have been lowered I have gotten better about things. I am not so anxiety ridden anymore. I do still stress about things but they are not so much health related issues but more my own personality issues - like preferring to stick to a schedule and not beign super spontaneous lol. Things like that.

I will let you go for now. I just wanted to share what helped me. Just accepting that I was commited to transplant and that it would happen when it was meant to happen. Once I started thinking about it and really looking at my beliefs I realized that when I was ready it would happen - no sooner (which was my big fear that mentally I would NOT be ready for the transition).

Another thing that helped take my mind off the worrying of what COULD go wrong was to make a list of things I would enjoy after transplant. I decided that to get my mind off the negative possibilities that I would add something positive to my "things I WILL do post transplant" list. I had so many anxiety attacks and stress filled days thinking about transplant that my positive list became extremely long extremely fast. It did help me though. It was one of the few things that was able to refocus my attention quickly and get me out of a panic attack. It made me smile and made me just in general a lot more fun to be around.

I hope you start feeling better mentally and that the call comes soon.

Love Linds
 
C

coltsfan715

New member
Hey there,

I would listen to your body, mind, soul when it comes to the length of time you have to wait. I personally can't stand when people try to put a time limit on the length of life someone has left. I think some of it MAY be predictable BUT I think MORE of it is determined by the amount of fight you are ready to put into it. I am not saying that people that die don't fight I am just saying of you go into something saying I am going to see this through to the end then I think you have a better chance than saying I am going to see this through to 6 months .. hopefully you get my point.

I had alot of the emotions you described when I was going through the process of transplant. I became extremely depressed last year and felt completely hopeless because I did not know what to do for myself. All I could see at the time was impending doom and I didn't want to see that at all. I asked questions that were important to ME but decided that I did not want to or need to know EVERYTHING and that it may actually not be best for me to know everything. For that reason I left alot of questions unanswered in regards to transplant and possible problems I might deal with afterwards. I figured and figure that I will deal with those issues as they arise.

I think the docs giving you a time frame that is very short is somewhat unrealistic but also know that I did not wait as long as I thought I would either. They may just be looking at you thinking that you are in more need than most at this point and that when the opportunity comes you will be the first or one of the first they go too. It is hard to predict when it will happen.

I will be honest I stressed alot and had ALOT of anxiety before transplant. I worried about things that quite honestly I should not have worried about. I had to give my mind time to catch up with where I was physically and my health situation and all. I had more fear wrapped up in not getting called at the "right" time than anything. Meaning how would I know if I was TOO healthy or what if I wanted to wait and then I was too sick and so on. Then it hit me - it will happen when it is supposed to happen. I can't speculate on could haves, should haves and would haves. I stopped focusing on the waiting and decided that God would NOT let the transplant happen until I WAS ready mentally, physically spiritually .. everything. When it finally did happen then I should rest assured that it was the right time. At that point I stopped focusing on the waiting and just started trying to enjoy the days. I lost track of time again and stopped counting.

I was called within a few days of my realization. I am not saying that is going to be the case if you make that decision for yourself just saying how it happened for me. I let it go and stopped obsessing over it and it happened literally within a week. Then when I got called I panicked again and my first thought was .. is it "RIGHT"? Then I said ya know what say you accept the offer and that you will head to the hospital when it is time AND if it works out then it WAS right and if it doesn't then it wasn't right. I tried to keep reminding myself during that day (the day of my call) that whatever happened God was going to make sure that it was supposed to happen the way it did. If I had surgery and woke up with new lungs then it was my time if not then for whatever reason it was NOT right. Well I can honestly say that was one of my most relaxing days ever. I laughed and joked with friends and family and we had a good humor filled day at the hospital that afternoon and night. I had several delays but never really worried about things going off or getting cancelled. I figured ... it will happen the way it is supposed too happen.

I was very fortunate and I was transplanted with that first call after only waiting 6 weeks. Many and most people are not so lucky. I had some axiety that trickled over into my recovery but as my meds have changed and my doses have been lowered I have gotten better about things. I am not so anxiety ridden anymore. I do still stress about things but they are not so much health related issues but more my own personality issues - like preferring to stick to a schedule and not beign super spontaneous lol. Things like that.

I will let you go for now. I just wanted to share what helped me. Just accepting that I was commited to transplant and that it would happen when it was meant to happen. Once I started thinking about it and really looking at my beliefs I realized that when I was ready it would happen - no sooner (which was my big fear that mentally I would NOT be ready for the transition).

Another thing that helped take my mind off the worrying of what COULD go wrong was to make a list of things I would enjoy after transplant. I decided that to get my mind off the negative possibilities that I would add something positive to my "things I WILL do post transplant" list. I had so many anxiety attacks and stress filled days thinking about transplant that my positive list became extremely long extremely fast. It did help me though. It was one of the few things that was able to refocus my attention quickly and get me out of a panic attack. It made me smile and made me just in general a lot more fun to be around.

I hope you start feeling better mentally and that the call comes soon.

Love Linds
 
C

coltsfan715

New member
Hey there,

I would listen to your body, mind, soul when it comes to the length of time you have to wait. I personally can't stand when people try to put a time limit on the length of life someone has left. I think some of it MAY be predictable BUT I think MORE of it is determined by the amount of fight you are ready to put into it. I am not saying that people that die don't fight I am just saying of you go into something saying I am going to see this through to the end then I think you have a better chance than saying I am going to see this through to 6 months .. hopefully you get my point.

I had alot of the emotions you described when I was going through the process of transplant. I became extremely depressed last year and felt completely hopeless because I did not know what to do for myself. All I could see at the time was impending doom and I didn't want to see that at all. I asked questions that were important to ME but decided that I did not want to or need to know EVERYTHING and that it may actually not be best for me to know everything. For that reason I left alot of questions unanswered in regards to transplant and possible problems I might deal with afterwards. I figured and figure that I will deal with those issues as they arise.

I think the docs giving you a time frame that is very short is somewhat unrealistic but also know that I did not wait as long as I thought I would either. They may just be looking at you thinking that you are in more need than most at this point and that when the opportunity comes you will be the first or one of the first they go too. It is hard to predict when it will happen.

I will be honest I stressed alot and had ALOT of anxiety before transplant. I worried about things that quite honestly I should not have worried about. I had to give my mind time to catch up with where I was physically and my health situation and all. I had more fear wrapped up in not getting called at the "right" time than anything. Meaning how would I know if I was TOO healthy or what if I wanted to wait and then I was too sick and so on. Then it hit me - it will happen when it is supposed to happen. I can't speculate on could haves, should haves and would haves. I stopped focusing on the waiting and decided that God would NOT let the transplant happen until I WAS ready mentally, physically spiritually .. everything. When it finally did happen then I should rest assured that it was the right time. At that point I stopped focusing on the waiting and just started trying to enjoy the days. I lost track of time again and stopped counting.

I was called within a few days of my realization. I am not saying that is going to be the case if you make that decision for yourself just saying how it happened for me. I let it go and stopped obsessing over it and it happened literally within a week. Then when I got called I panicked again and my first thought was .. is it "RIGHT"? Then I said ya know what say you accept the offer and that you will head to the hospital when it is time AND if it works out then it WAS right and if it doesn't then it wasn't right. I tried to keep reminding myself during that day (the day of my call) that whatever happened God was going to make sure that it was supposed to happen the way it did. If I had surgery and woke up with new lungs then it was my time if not then for whatever reason it was NOT right. Well I can honestly say that was one of my most relaxing days ever. I laughed and joked with friends and family and we had a good humor filled day at the hospital that afternoon and night. I had several delays but never really worried about things going off or getting cancelled. I figured ... it will happen the way it is supposed too happen.

I was very fortunate and I was transplanted with that first call after only waiting 6 weeks. Many and most people are not so lucky. I had some axiety that trickled over into my recovery but as my meds have changed and my doses have been lowered I have gotten better about things. I am not so anxiety ridden anymore. I do still stress about things but they are not so much health related issues but more my own personality issues - like preferring to stick to a schedule and not beign super spontaneous lol. Things like that.

I will let you go for now. I just wanted to share what helped me. Just accepting that I was commited to transplant and that it would happen when it was meant to happen. Once I started thinking about it and really looking at my beliefs I realized that when I was ready it would happen - no sooner (which was my big fear that mentally I would NOT be ready for the transition).

Another thing that helped take my mind off the worrying of what COULD go wrong was to make a list of things I would enjoy after transplant. I decided that to get my mind off the negative possibilities that I would add something positive to my "things I WILL do post transplant" list. I had so many anxiety attacks and stress filled days thinking about transplant that my positive list became extremely long extremely fast. It did help me though. It was one of the few things that was able to refocus my attention quickly and get me out of a panic attack. It made me smile and made me just in general a lot more fun to be around.

I hope you start feeling better mentally and that the call comes soon.

Love Linds
 
O

oldtimer1959

New member
I must agree with everyone who spoke out against the 'time sentence' you were given. My parents were told I wouldn't see 16 - I'm 48.

You can only do your best while waiting. Do your treatments, take appropriate meds and do not be depressed. Stay as active as you can.

I've been seen at the transplant leve for a year now. Unlike a lot of 'common' Cfers - I am overweight. I must achieve a BMMI of <30, which is approximately 190 pounds on me. I've lost a grand total of 15 pounds over the past year. I do not want to 'flash' lose it as I'm sure I'll get sick. I've always been a big gal - or at least once we figured out why I wasn't thriving like a normal 8th grader should. I have very little pancreatic involvment - even children's level enzymes are too much for me.

It is discouraging when I realize that if I dont get the weight off, I will be passed over no matter what my lung function is at the time. Where I'm going now has a higher limit for thieir patients weights (the previous place I looked into went by 100# for 5 feet and 5# per inch thereafter +/- 10%....I would have had to weight between 135 and 148 on the top end. I look like a freakin' skeleton at 135 - been there once in the last 15 years and that was after my first 8 week bought with pancreitis!)

I guess that I can't say much more except I really empathize with your frustration. Everything happens for a reason and maybe the doc told you this to 'scare' you into compliance? Silly if you ask me, but I can see some docs thinking it was a logical reason to be harsh. Look to the future.

Have faith. Prayers for you......
 
O

oldtimer1959

New member
I must agree with everyone who spoke out against the 'time sentence' you were given. My parents were told I wouldn't see 16 - I'm 48.

You can only do your best while waiting. Do your treatments, take appropriate meds and do not be depressed. Stay as active as you can.

I've been seen at the transplant leve for a year now. Unlike a lot of 'common' Cfers - I am overweight. I must achieve a BMMI of <30, which is approximately 190 pounds on me. I've lost a grand total of 15 pounds over the past year. I do not want to 'flash' lose it as I'm sure I'll get sick. I've always been a big gal - or at least once we figured out why I wasn't thriving like a normal 8th grader should. I have very little pancreatic involvment - even children's level enzymes are too much for me.

It is discouraging when I realize that if I dont get the weight off, I will be passed over no matter what my lung function is at the time. Where I'm going now has a higher limit for thieir patients weights (the previous place I looked into went by 100# for 5 feet and 5# per inch thereafter +/- 10%....I would have had to weight between 135 and 148 on the top end. I look like a freakin' skeleton at 135 - been there once in the last 15 years and that was after my first 8 week bought with pancreitis!)

I guess that I can't say much more except I really empathize with your frustration. Everything happens for a reason and maybe the doc told you this to 'scare' you into compliance? Silly if you ask me, but I can see some docs thinking it was a logical reason to be harsh. Look to the future.

Have faith. Prayers for you......
 
O

oldtimer1959

New member
I must agree with everyone who spoke out against the 'time sentence' you were given. My parents were told I wouldn't see 16 - I'm 48.

You can only do your best while waiting. Do your treatments, take appropriate meds and do not be depressed. Stay as active as you can.

I've been seen at the transplant leve for a year now. Unlike a lot of 'common' Cfers - I am overweight. I must achieve a BMMI of <30, which is approximately 190 pounds on me. I've lost a grand total of 15 pounds over the past year. I do not want to 'flash' lose it as I'm sure I'll get sick. I've always been a big gal - or at least once we figured out why I wasn't thriving like a normal 8th grader should. I have very little pancreatic involvment - even children's level enzymes are too much for me.

It is discouraging when I realize that if I dont get the weight off, I will be passed over no matter what my lung function is at the time. Where I'm going now has a higher limit for thieir patients weights (the previous place I looked into went by 100# for 5 feet and 5# per inch thereafter +/- 10%....I would have had to weight between 135 and 148 on the top end. I look like a freakin' skeleton at 135 - been there once in the last 15 years and that was after my first 8 week bought with pancreitis!)

I guess that I can't say much more except I really empathize with your frustration. Everything happens for a reason and maybe the doc told you this to 'scare' you into compliance? Silly if you ask me, but I can see some docs thinking it was a logical reason to be harsh. Look to the future.

Have faith. Prayers for you......
 
O

oldtimer1959

New member
I must agree with everyone who spoke out against the 'time sentence' you were given. My parents were told I wouldn't see 16 - I'm 48.

You can only do your best while waiting. Do your treatments, take appropriate meds and do not be depressed. Stay as active as you can.

I've been seen at the transplant leve for a year now. Unlike a lot of 'common' Cfers - I am overweight. I must achieve a BMMI of <30, which is approximately 190 pounds on me. I've lost a grand total of 15 pounds over the past year. I do not want to 'flash' lose it as I'm sure I'll get sick. I've always been a big gal - or at least once we figured out why I wasn't thriving like a normal 8th grader should. I have very little pancreatic involvment - even children's level enzymes are too much for me.

It is discouraging when I realize that if I dont get the weight off, I will be passed over no matter what my lung function is at the time. Where I'm going now has a higher limit for thieir patients weights (the previous place I looked into went by 100# for 5 feet and 5# per inch thereafter +/- 10%....I would have had to weight between 135 and 148 on the top end. I look like a freakin' skeleton at 135 - been there once in the last 15 years and that was after my first 8 week bought with pancreitis!)

I guess that I can't say much more except I really empathize with your frustration. Everything happens for a reason and maybe the doc told you this to 'scare' you into compliance? Silly if you ask me, but I can see some docs thinking it was a logical reason to be harsh. Look to the future.

Have faith. Prayers for you......
 
O

oldtimer1959

New member
I must agree with everyone who spoke out against the 'time sentence' you were given. My parents were told I wouldn't see 16 - I'm 48.

You can only do your best while waiting. Do your treatments, take appropriate meds and do not be depressed. Stay as active as you can.

I've been seen at the transplant leve for a year now. Unlike a lot of 'common' Cfers - I am overweight. I must achieve a BMMI of <30, which is approximately 190 pounds on me. I've lost a grand total of 15 pounds over the past year. I do not want to 'flash' lose it as I'm sure I'll get sick. I've always been a big gal - or at least once we figured out why I wasn't thriving like a normal 8th grader should. I have very little pancreatic involvment - even children's level enzymes are too much for me.

It is discouraging when I realize that if I dont get the weight off, I will be passed over no matter what my lung function is at the time. Where I'm going now has a higher limit for thieir patients weights (the previous place I looked into went by 100# for 5 feet and 5# per inch thereafter +/- 10%....I would have had to weight between 135 and 148 on the top end. I look like a freakin' skeleton at 135 - been there once in the last 15 years and that was after my first 8 week bought with pancreitis!)

I guess that I can't say much more except I really empathize with your frustration. Everything happens for a reason and maybe the doc told you this to 'scare' you into compliance? Silly if you ask me, but I can see some docs thinking it was a logical reason to be harsh. Look to the future.

Have faith. Prayers for you......
 
B

Breezy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i>

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.



Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

Ooh goody i have hope! I am 4'11 too! Did you have to wait for lungs? I am about to be evaluated and at the TGH the wait is 3-5 months (not bad at all!)

I WISH YOU LUCK LILLITH!!!!!!!!!!!!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.</end quote></div>
 
B

Breezy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i>

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.



Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

Ooh goody i have hope! I am 4'11 too! Did you have to wait for lungs? I am about to be evaluated and at the TGH the wait is 3-5 months (not bad at all!)

I WISH YOU LUCK LILLITH!!!!!!!!!!!!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.</end quote></div>
 
B

Breezy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i>

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.



Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

Ooh goody i have hope! I am 4'11 too! Did you have to wait for lungs? I am about to be evaluated and at the TGH the wait is 3-5 months (not bad at all!)

I WISH YOU LUCK LILLITH!!!!!!!!!!!!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.</end quote></div>
 
B

Breezy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i>

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.



Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

Ooh goody i have hope! I am 4'11 too! Did you have to wait for lungs? I am about to be evaluated and at the TGH the wait is 3-5 months (not bad at all!)

I WISH YOU LUCK LILLITH!!!!!!!!!!!!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.</end quote>
 
B

Breezy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>summer732</b></i>

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.



Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

Ooh goody i have hope! I am 4'11 too! Did you have to wait for lungs? I am about to be evaluated and at the TGH the wait is 3-5 months (not bad at all!)

I WISH YOU LUCK LILLITH!!!!!!!!!!!!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.</end quote>
 
You must log in or register to reply here.
Top