How does it feel?!

[Alyssaaaaxo]

so i just started talking to my transplant team and im starting the process of all those tests and stuff. and i want to know is it all scary?! cause im am sooooo scared <img src="i/expressions/face-icon-small-sad.gif" border="0"> and how does it feel after?!

i would LOVEEEE to be able to breather normally....i can imagine at least how it MIGHT feel. i want to be able to go running and play sport cause i cant do any of that now cause i cant even walk without getting winded.

 

[Alyssaaaaxo]

so i just started talking to my transplant team and im starting the process of all those tests and stuff. and i want to know is it all scary?! cause im am sooooo scared <img src="i/expressions/face-icon-small-sad.gif" border="0"> and how does it feel after?!

i would LOVEEEE to be able to breather normally....i can imagine at least how it MIGHT feel. i want to be able to go running and play sport cause i cant do any of that now cause i cant even walk without getting winded.

 

[Alyssaaaaxo]

so i just started talking to my transplant team and im starting the process of all those tests and stuff. and i want to know is it all scary?! cause im am sooooo scared <img src="i/expressions/face-icon-small-sad.gif" border="0"> and how does it feel after?!

i would LOVEEEE to be able to breather normally....i can imagine at least how it MIGHT feel. i want to be able to go running and play sport cause i cant do any of that now cause i cant even walk without getting winded.

 

[Alyssaaaaxo]

so i just started talking to my transplant team and im starting the process of all those tests and stuff. and i want to know is it all scary?! cause im am sooooo scared <img src="i/expressions/face-icon-small-sad.gif" border="0"> and how does it feel after?!

i would LOVEEEE to be able to breather normally....i can imagine at least how it MIGHT feel. i want to be able to go running and play sport cause i cant do any of that now cause i cant even walk without getting winded.

 

[Alyssaaaaxo]

so i just started talking to my transplant team and im starting the process of all those tests and stuff. and i want to know is it all scary?! cause im am sooooo scared <img src="i/expressions/face-icon-small-sad.gif" border="0"> and how does it feel after?!
<br />
<br />i would LOVEEEE to be able to breather normally....i can imagine at least how it MIGHT feel. i want to be able to go running and play sport cause i cant do any of that now cause i cant even walk without getting winded.

 

[Transplantmommy]

I completely understand what you are saying because I have been there and done that. It was not scary for me....I knew that it was something that had to be done and I went at it full force. The tests were not that bad....6 minute walk, x-rays, CT scans, blood work, PFT's, psych eval, and a few other things. I think that the most annoying one was the heart cath. I had to be put at least partially under for that and they went through the groin so there was a little pain there afterward. I also had tests that other might not have because I had double lung and liver.

Before the transplants I could hardly stand at the sink to do the dishes or stand at the stove to cook my family dinner (I am married and have a son). I had a hard time taking a shower more than 3 times a week or holding my son to feed him his bottle. I was on O2 all the time, on IV's frequently, and did TONS of breathing treatments every day. I was also coughing up about 3 or more cups of junk a day and blood on occasion. It really sucked and I know how you feel.

I had the double lung and liver transplant on January 31, 2007 and I was taking my son to the park only like 3 months after (I walked there and then walked home). I went on a hot air balloon ride that May. It was amazing to be able to do that stuff! In June I ran into problems with my colon and had to have that removed but it was not due to the transplants....I had c-diff. Since everything with that is over, I feel like 1,000% better than I ever felt. I even went to NYC last week with a group of CFers and walked probably a total of 7 miles that day and was not tired a single bit!

Of course I had some pain after the transplant...everyone does. But if I had to do it all again (the evaluations, the pain, and everything else), I would. If you have any questions, just ask!

 

[Transplantmommy]

I completely understand what you are saying because I have been there and done that. It was not scary for me....I knew that it was something that had to be done and I went at it full force. The tests were not that bad....6 minute walk, x-rays, CT scans, blood work, PFT's, psych eval, and a few other things. I think that the most annoying one was the heart cath. I had to be put at least partially under for that and they went through the groin so there was a little pain there afterward. I also had tests that other might not have because I had double lung and liver.

Before the transplants I could hardly stand at the sink to do the dishes or stand at the stove to cook my family dinner (I am married and have a son). I had a hard time taking a shower more than 3 times a week or holding my son to feed him his bottle. I was on O2 all the time, on IV's frequently, and did TONS of breathing treatments every day. I was also coughing up about 3 or more cups of junk a day and blood on occasion. It really sucked and I know how you feel.

I had the double lung and liver transplant on January 31, 2007 and I was taking my son to the park only like 3 months after (I walked there and then walked home). I went on a hot air balloon ride that May. It was amazing to be able to do that stuff! In June I ran into problems with my colon and had to have that removed but it was not due to the transplants....I had c-diff. Since everything with that is over, I feel like 1,000% better than I ever felt. I even went to NYC last week with a group of CFers and walked probably a total of 7 miles that day and was not tired a single bit!

Of course I had some pain after the transplant...everyone does. But if I had to do it all again (the evaluations, the pain, and everything else), I would. If you have any questions, just ask!

 

[Transplantmommy]

I completely understand what you are saying because I have been there and done that. It was not scary for me....I knew that it was something that had to be done and I went at it full force. The tests were not that bad....6 minute walk, x-rays, CT scans, blood work, PFT's, psych eval, and a few other things. I think that the most annoying one was the heart cath. I had to be put at least partially under for that and they went through the groin so there was a little pain there afterward. I also had tests that other might not have because I had double lung and liver.

Before the transplants I could hardly stand at the sink to do the dishes or stand at the stove to cook my family dinner (I am married and have a son). I had a hard time taking a shower more than 3 times a week or holding my son to feed him his bottle. I was on O2 all the time, on IV's frequently, and did TONS of breathing treatments every day. I was also coughing up about 3 or more cups of junk a day and blood on occasion. It really sucked and I know how you feel.

I had the double lung and liver transplant on January 31, 2007 and I was taking my son to the park only like 3 months after (I walked there and then walked home). I went on a hot air balloon ride that May. It was amazing to be able to do that stuff! In June I ran into problems with my colon and had to have that removed but it was not due to the transplants....I had c-diff. Since everything with that is over, I feel like 1,000% better than I ever felt. I even went to NYC last week with a group of CFers and walked probably a total of 7 miles that day and was not tired a single bit!

Of course I had some pain after the transplant...everyone does. But if I had to do it all again (the evaluations, the pain, and everything else), I would. If you have any questions, just ask!

 

[Transplantmommy]

I completely understand what you are saying because I have been there and done that. It was not scary for me....I knew that it was something that had to be done and I went at it full force. The tests were not that bad....6 minute walk, x-rays, CT scans, blood work, PFT's, psych eval, and a few other things. I think that the most annoying one was the heart cath. I had to be put at least partially under for that and they went through the groin so there was a little pain there afterward. I also had tests that other might not have because I had double lung and liver.

Before the transplants I could hardly stand at the sink to do the dishes or stand at the stove to cook my family dinner (I am married and have a son). I had a hard time taking a shower more than 3 times a week or holding my son to feed him his bottle. I was on O2 all the time, on IV's frequently, and did TONS of breathing treatments every day. I was also coughing up about 3 or more cups of junk a day and blood on occasion. It really sucked and I know how you feel.

I had the double lung and liver transplant on January 31, 2007 and I was taking my son to the park only like 3 months after (I walked there and then walked home). I went on a hot air balloon ride that May. It was amazing to be able to do that stuff! In June I ran into problems with my colon and had to have that removed but it was not due to the transplants....I had c-diff. Since everything with that is over, I feel like 1,000% better than I ever felt. I even went to NYC last week with a group of CFers and walked probably a total of 7 miles that day and was not tired a single bit!

Of course I had some pain after the transplant...everyone does. But if I had to do it all again (the evaluations, the pain, and everything else), I would. If you have any questions, just ask!

 

[Transplantmommy]

I completely understand what you are saying because I have been there and done that. It was not scary for me....I knew that it was something that had to be done and I went at it full force. The tests were not that bad....6 minute walk, x-rays, CT scans, blood work, PFT's, psych eval, and a few other things. I think that the most annoying one was the heart cath. I had to be put at least partially under for that and they went through the groin so there was a little pain there afterward. I also had tests that other might not have because I had double lung and liver.
<br />
<br />Before the transplants I could hardly stand at the sink to do the dishes or stand at the stove to cook my family dinner (I am married and have a son). I had a hard time taking a shower more than 3 times a week or holding my son to feed him his bottle. I was on O2 all the time, on IV's frequently, and did TONS of breathing treatments every day. I was also coughing up about 3 or more cups of junk a day and blood on occasion. It really sucked and I know how you feel.
<br />
<br />I had the double lung and liver transplant on January 31, 2007 and I was taking my son to the park only like 3 months after (I walked there and then walked home). I went on a hot air balloon ride that May. It was amazing to be able to do that stuff! In June I ran into problems with my colon and had to have that removed but it was not due to the transplants....I had c-diff. Since everything with that is over, I feel like 1,000% better than I ever felt. I even went to NYC last week with a group of CFers and walked probably a total of 7 miles that day and was not tired a single bit!
<br />
<br />Of course I had some pain after the transplant...everyone does. But if I had to do it all again (the evaluations, the pain, and everything else), I would. If you have any questions, just ask!

 

[OldTex]

I have to agree with Patti on almost all counts. I didn't think any of the test were very bad on the transplant work-up and I don't recall anything that was very discomforting or painful (I don't put a high entertainment value on prepping for a colonoscopy, however. Maybe you will get a pass on this and I was asleep for the actual procedure).

When it actually comes time for the transplant I was worried for my family more than I was afraid for myself (this was only 6 months ago). I was so glad to get the call and was excited about getting it done! Like Patti I was getting really miserable and everything was so hard to do. It's hard for people to understand what it's like to be SOB all of the time and not be able to do basically anything that's physical.

Since my transplant I have been very fortunate and things have gone extremely well. Life is better than I ever anticipated and there is almost nothing that I can't do now. I've gained about 4 hours per day in not doing nebulizer treatments any longer, don't have to use the vest, don't have to use O2 and enjoy eating again. I have trouble sitting still now and want to exercise, walk and run all of the time. I know that there are problems to be expected but I'm trying to enjoy the best in life daily and the quality of living is an unbelievable change.

I hope your transplant process goes well and you look forward to it as an adventure. I know they are getting better and better at doing transplants and hopefully you will have many good years to look forward to.

Good luck and take care,
Jim J.

 

[OldTex]

I have to agree with Patti on almost all counts. I didn't think any of the test were very bad on the transplant work-up and I don't recall anything that was very discomforting or painful (I don't put a high entertainment value on prepping for a colonoscopy, however. Maybe you will get a pass on this and I was asleep for the actual procedure).

When it actually comes time for the transplant I was worried for my family more than I was afraid for myself (this was only 6 months ago). I was so glad to get the call and was excited about getting it done! Like Patti I was getting really miserable and everything was so hard to do. It's hard for people to understand what it's like to be SOB all of the time and not be able to do basically anything that's physical.

Since my transplant I have been very fortunate and things have gone extremely well. Life is better than I ever anticipated and there is almost nothing that I can't do now. I've gained about 4 hours per day in not doing nebulizer treatments any longer, don't have to use the vest, don't have to use O2 and enjoy eating again. I have trouble sitting still now and want to exercise, walk and run all of the time. I know that there are problems to be expected but I'm trying to enjoy the best in life daily and the quality of living is an unbelievable change.

I hope your transplant process goes well and you look forward to it as an adventure. I know they are getting better and better at doing transplants and hopefully you will have many good years to look forward to.

Good luck and take care,
Jim J.

 

[OldTex]

I have to agree with Patti on almost all counts. I didn't think any of the test were very bad on the transplant work-up and I don't recall anything that was very discomforting or painful (I don't put a high entertainment value on prepping for a colonoscopy, however. Maybe you will get a pass on this and I was asleep for the actual procedure).

When it actually comes time for the transplant I was worried for my family more than I was afraid for myself (this was only 6 months ago). I was so glad to get the call and was excited about getting it done! Like Patti I was getting really miserable and everything was so hard to do. It's hard for people to understand what it's like to be SOB all of the time and not be able to do basically anything that's physical.

Since my transplant I have been very fortunate and things have gone extremely well. Life is better than I ever anticipated and there is almost nothing that I can't do now. I've gained about 4 hours per day in not doing nebulizer treatments any longer, don't have to use the vest, don't have to use O2 and enjoy eating again. I have trouble sitting still now and want to exercise, walk and run all of the time. I know that there are problems to be expected but I'm trying to enjoy the best in life daily and the quality of living is an unbelievable change.

I hope your transplant process goes well and you look forward to it as an adventure. I know they are getting better and better at doing transplants and hopefully you will have many good years to look forward to.

Good luck and take care,
Jim J.

 

[OldTex]

I have to agree with Patti on almost all counts. I didn't think any of the test were very bad on the transplant work-up and I don't recall anything that was very discomforting or painful (I don't put a high entertainment value on prepping for a colonoscopy, however. Maybe you will get a pass on this and I was asleep for the actual procedure).

When it actually comes time for the transplant I was worried for my family more than I was afraid for myself (this was only 6 months ago). I was so glad to get the call and was excited about getting it done! Like Patti I was getting really miserable and everything was so hard to do. It's hard for people to understand what it's like to be SOB all of the time and not be able to do basically anything that's physical.

Since my transplant I have been very fortunate and things have gone extremely well. Life is better than I ever anticipated and there is almost nothing that I can't do now. I've gained about 4 hours per day in not doing nebulizer treatments any longer, don't have to use the vest, don't have to use O2 and enjoy eating again. I have trouble sitting still now and want to exercise, walk and run all of the time. I know that there are problems to be expected but I'm trying to enjoy the best in life daily and the quality of living is an unbelievable change.

I hope your transplant process goes well and you look forward to it as an adventure. I know they are getting better and better at doing transplants and hopefully you will have many good years to look forward to.

Good luck and take care,
Jim J.

 

[OldTex]

I have to agree with Patti on almost all counts. I didn't think any of the test were very bad on the transplant work-up and I don't recall anything that was very discomforting or painful (I don't put a high entertainment value on prepping for a colonoscopy, however. Maybe you will get a pass on this and I was asleep for the actual procedure).
<br />
<br />When it actually comes time for the transplant I was worried for my family more than I was afraid for myself (this was only 6 months ago). I was so glad to get the call and was excited about getting it done! Like Patti I was getting really miserable and everything was so hard to do. It's hard for people to understand what it's like to be SOB all of the time and not be able to do basically anything that's physical.
<br />
<br />Since my transplant I have been very fortunate and things have gone extremely well. Life is better than I ever anticipated and there is almost nothing that I can't do now. I've gained about 4 hours per day in not doing nebulizer treatments any longer, don't have to use the vest, don't have to use O2 and enjoy eating again. I have trouble sitting still now and want to exercise, walk and run all of the time. I know that there are problems to be expected but I'm trying to enjoy the best in life daily and the quality of living is an unbelievable change.
<br />
<br />I hope your transplant process goes well and you look forward to it as an adventure. I know they are getting better and better at doing transplants and hopefully you will have many good years to look forward to.
<br />
<br />Good luck and take care,
<br />Jim J.

 

[CountryGirl]

Hey there,

So yeah, I had pretty much the same things Patti had done for her eval...I did not have to get a colonoscopy, I was young enough to not need it...I was 18 when I got evaluated so you're like in the same boat as I was.
The only thing that even sort of hurt was the arterial blood gas, they did it in my wrist and I think it got inflamed afterwards.

I actually wrote an essay last year for my eng class on getting a transplant and organ donation and I talked about how I felt. It was like 12 pages so I'll shorten it up a bit...you dont feel that amazing breath you see on tv but after a few days you start to notice you arent breathing heavily and you arent coughing like you used to...you dont cough in the morning when you wake up. However, I did have loads of pain. I was on morphine for six months before my trans so I had built up a tolerance and they had a hard time controlling the pain..for a day or two I actually asked myself if I really should have gone through with my decision. But once the pain was under control I started feeling alot better and a couple weeks out I was certaintly glad I had made my decision and even if I had to go through all that pain again...I would.

I can swim now and I'm able to ride horses without getting tired. I can walk and even run (although I still dont like it) and not get out of breath or start coughing. I like NEVER cough anymore. I remember one thing my friend Jamie said to me when I got back to school about half a year after my tx, we were walking to the car from my apt and she goes "WOW, you really did get a lung transplant!"

It's a little hard at first getting used to all the changes but after a month and most certaintly two, its just a whole new routine and you get used to it.

One thing I really recommend, that I was told to do, is build up your leg and back muscles. Personally I chose English riding because it uses alot of leg strength. My pfts were like 29 at the time and I could only last about 5-10min riding at a time but after a couple months I could ride for 30 min, I still got short of breath but I was healthier for the surgery and it helped a TON afterwards! So you should try that, my doctors were even surprised at how well I did after my tx.

If you have any other questions Im happy to answer them.

 

[CountryGirl]

Hey there,

So yeah, I had pretty much the same things Patti had done for her eval...I did not have to get a colonoscopy, I was young enough to not need it...I was 18 when I got evaluated so you're like in the same boat as I was.
The only thing that even sort of hurt was the arterial blood gas, they did it in my wrist and I think it got inflamed afterwards.

I actually wrote an essay last year for my eng class on getting a transplant and organ donation and I talked about how I felt. It was like 12 pages so I'll shorten it up a bit...you dont feel that amazing breath you see on tv but after a few days you start to notice you arent breathing heavily and you arent coughing like you used to...you dont cough in the morning when you wake up. However, I did have loads of pain. I was on morphine for six months before my trans so I had built up a tolerance and they had a hard time controlling the pain..for a day or two I actually asked myself if I really should have gone through with my decision. But once the pain was under control I started feeling alot better and a couple weeks out I was certaintly glad I had made my decision and even if I had to go through all that pain again...I would.

I can swim now and I'm able to ride horses without getting tired. I can walk and even run (although I still dont like it) and not get out of breath or start coughing. I like NEVER cough anymore. I remember one thing my friend Jamie said to me when I got back to school about half a year after my tx, we were walking to the car from my apt and she goes "WOW, you really did get a lung transplant!"

It's a little hard at first getting used to all the changes but after a month and most certaintly two, its just a whole new routine and you get used to it.

One thing I really recommend, that I was told to do, is build up your leg and back muscles. Personally I chose English riding because it uses alot of leg strength. My pfts were like 29 at the time and I could only last about 5-10min riding at a time but after a couple months I could ride for 30 min, I still got short of breath but I was healthier for the surgery and it helped a TON afterwards! So you should try that, my doctors were even surprised at how well I did after my tx.

If you have any other questions Im happy to answer them.

 

[CountryGirl]

Hey there,

So yeah, I had pretty much the same things Patti had done for her eval...I did not have to get a colonoscopy, I was young enough to not need it...I was 18 when I got evaluated so you're like in the same boat as I was.
The only thing that even sort of hurt was the arterial blood gas, they did it in my wrist and I think it got inflamed afterwards.

I actually wrote an essay last year for my eng class on getting a transplant and organ donation and I talked about how I felt. It was like 12 pages so I'll shorten it up a bit...you dont feel that amazing breath you see on tv but after a few days you start to notice you arent breathing heavily and you arent coughing like you used to...you dont cough in the morning when you wake up. However, I did have loads of pain. I was on morphine for six months before my trans so I had built up a tolerance and they had a hard time controlling the pain..for a day or two I actually asked myself if I really should have gone through with my decision. But once the pain was under control I started feeling alot better and a couple weeks out I was certaintly glad I had made my decision and even if I had to go through all that pain again...I would.

I can swim now and I'm able to ride horses without getting tired. I can walk and even run (although I still dont like it) and not get out of breath or start coughing. I like NEVER cough anymore. I remember one thing my friend Jamie said to me when I got back to school about half a year after my tx, we were walking to the car from my apt and she goes "WOW, you really did get a lung transplant!"

It's a little hard at first getting used to all the changes but after a month and most certaintly two, its just a whole new routine and you get used to it.

One thing I really recommend, that I was told to do, is build up your leg and back muscles. Personally I chose English riding because it uses alot of leg strength. My pfts were like 29 at the time and I could only last about 5-10min riding at a time but after a couple months I could ride for 30 min, I still got short of breath but I was healthier for the surgery and it helped a TON afterwards! So you should try that, my doctors were even surprised at how well I did after my tx.

If you have any other questions Im happy to answer them.

 

[CountryGirl]

Hey there,

So yeah, I had pretty much the same things Patti had done for her eval...I did not have to get a colonoscopy, I was young enough to not need it...I was 18 when I got evaluated so you're like in the same boat as I was.
The only thing that even sort of hurt was the arterial blood gas, they did it in my wrist and I think it got inflamed afterwards.

I actually wrote an essay last year for my eng class on getting a transplant and organ donation and I talked about how I felt. It was like 12 pages so I'll shorten it up a bit...you dont feel that amazing breath you see on tv but after a few days you start to notice you arent breathing heavily and you arent coughing like you used to...you dont cough in the morning when you wake up. However, I did have loads of pain. I was on morphine for six months before my trans so I had built up a tolerance and they had a hard time controlling the pain..for a day or two I actually asked myself if I really should have gone through with my decision. But once the pain was under control I started feeling alot better and a couple weeks out I was certaintly glad I had made my decision and even if I had to go through all that pain again...I would.

I can swim now and I'm able to ride horses without getting tired. I can walk and even run (although I still dont like it) and not get out of breath or start coughing. I like NEVER cough anymore. I remember one thing my friend Jamie said to me when I got back to school about half a year after my tx, we were walking to the car from my apt and she goes "WOW, you really did get a lung transplant!"

It's a little hard at first getting used to all the changes but after a month and most certaintly two, its just a whole new routine and you get used to it.

One thing I really recommend, that I was told to do, is build up your leg and back muscles. Personally I chose English riding because it uses alot of leg strength. My pfts were like 29 at the time and I could only last about 5-10min riding at a time but after a couple months I could ride for 30 min, I still got short of breath but I was healthier for the surgery and it helped a TON afterwards! So you should try that, my doctors were even surprised at how well I did after my tx.

If you have any other questions Im happy to answer them.

 

[CountryGirl]

Hey there,
<br />
<br />So yeah, I had pretty much the same things Patti had done for her eval...I did not have to get a colonoscopy, I was young enough to not need it...I was 18 when I got evaluated so you're like in the same boat as I was.
<br />The only thing that even sort of hurt was the arterial blood gas, they did it in my wrist and I think it got inflamed afterwards.
<br />
<br />I actually wrote an essay last year for my eng class on getting a transplant and organ donation and I talked about how I felt. It was like 12 pages so I'll shorten it up a bit...you dont feel that amazing breath you see on tv but after a few days you start to notice you arent breathing heavily and you arent coughing like you used to...you dont cough in the morning when you wake up. However, I did have loads of pain. I was on morphine for six months before my trans so I had built up a tolerance and they had a hard time controlling the pain..for a day or two I actually asked myself if I really should have gone through with my decision. But once the pain was under control I started feeling alot better and a couple weeks out I was certaintly glad I had made my decision and even if I had to go through all that pain again...I would.
<br />
<br />I can swim now and I'm able to ride horses without getting tired. I can walk and even run (although I still dont like it) and not get out of breath or start coughing. I like NEVER cough anymore. I remember one thing my friend Jamie said to me when I got back to school about half a year after my tx, we were walking to the car from my apt and she goes "WOW, you really did get a lung transplant!"
<br />
<br />It's a little hard at first getting used to all the changes but after a month and most certaintly two, its just a whole new routine and you get used to it.
<br />
<br />One thing I really recommend, that I was told to do, is build up your leg and back muscles. Personally I chose English riding because it uses alot of leg strength. My pfts were like 29 at the time and I could only last about 5-10min riding at a time but after a couple months I could ride for 30 min, I still got short of breath but I was healthier for the surgery and it helped a TON afterwards! So you should try that, my doctors were even surprised at how well I did after my tx.
<br />
<br />If you have any other questions Im happy to answer them.