waiting for tx...have questions

[anonymous]

Hi!
My name is Beth. I am almost 25 and I have Cystic Fibrosis. I have just completed my pre-lung transplant evaluation. I received so much information when I was there that it scared me! I have been thinking about it over and over again and I am finding this is probably the best option. It sounds scary but to me I'm realizing if I don't do this then my lungs are going to keep getting worse. I understand how scary it is.. I have also talked to people who have had a lung transplant already and as you said they are doing well. They said it was all worth what they went through. How do you feel about all this? Where did you have your evaluation at? I had mine done at Ochsner Hospital in Louisiana but I live in Florida. All my tests were normal. Thank you Jesus!!!!!!! Other than that, I'm now waiting to get the transplant financed. Then before I get put on the list, I have to move there until I have the transplant and then I have to live there another three months after it is over. Then they said I can come back home. Well, I don't want to bore you so I'll close. If you would like, feel free to email me anytime... My email is: boakley1103@aol.com. Believe me, I know how scary it is but I believe we can get through it!
Sincerely,
Beth

 

[anonymous]

Hi!
My name is Beth. I am almost 25 and I have Cystic Fibrosis. I have just completed my pre-lung transplant evaluation. I received so much information when I was there that it scared me! I have been thinking about it over and over again and I am finding this is probably the best option. It sounds scary but to me I'm realizing if I don't do this then my lungs are going to keep getting worse. I understand how scary it is.. I have also talked to people who have had a lung transplant already and as you said they are doing well. They said it was all worth what they went through. How do you feel about all this? Where did you have your evaluation at? I had mine done at Ochsner Hospital in Louisiana but I live in Florida. All my tests were normal. Thank you Jesus!!!!!!! Other than that, I'm now waiting to get the transplant financed. Then before I get put on the list, I have to move there until I have the transplant and then I have to live there another three months after it is over. Then they said I can come back home. Well, I don't want to bore you so I'll close. If you would like, feel free to email me anytime... My email is: boakley1103@aol.com. Believe me, I know how scary it is but I believe we can get through it!
Sincerely,
Beth

 

[anonymous]

Hi Candace,
My name is Beth. I am almost 25 and I have CF. I have just completed my pre-lung transplant evaluation. All my tests were normal. Now, I'm waiting to get the transplant financed. I was wondering if you would please email me and share your experience with me. How has it changed your life and was it worth what you went through. These are just a few questions I have, oh, and how many pills do you have to take? If you will, please email me back. I would appreciate it. Thanks.
Thanks again, and God bless you,
Beth
My email address is: boakley1103@aol.com

 

[anonymous]

Hi Candace,
My name is Beth. I am almost 25 and I have CF. I have just completed my pre-lung transplant evaluation. All my tests were normal. Now, I'm waiting to get the transplant financed. I was wondering if you would please email me and share your experience with me. How has it changed your life and was it worth what you went through. These are just a few questions I have, oh, and how many pills do you have to take? If you will, please email me back. I would appreciate it. Thanks.
Thanks again, and God bless you,
Beth
My email address is: boakley1103@aol.com

 

[supermanfan]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hi Candace,

My name is Beth.... and how many pills do you have to take? ...........
Beth<hr></blockquote>

Beth, at first you will probably take more pills, but as time goes on your body accepts the transplant more and more, and therefore the medication levels can be lowered.

For instance I was on:

500 ml Cellcept morning, and night
500 ml Gancyclovier morning, and night
20 ml of Prednisone every morning
500 ml Sporanox morning, and night
anywhere from 3-5 ml of FK506 morning and night

Compared to now:
250 ml Cellcept morning, and night
500 ml Gancyclovier mornings only
500 ml Sporanox nights only
10 ml of Prednisone every other day
1 ml FK506 mornings, and 1.5 nights

That's a bit different, and of course I also take Calcium, Magnisium, and vitamines which you should be taking now anyways. Remember CF patients don't absorbe all the nutrients from food that is eaten. I also still take Pancrease.

Just remember, everybody is different. Just because one person does one thing doesn't mean you will be doing the same.

Hope this helps
Denise

 

[supermanfan]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hi Candace,

My name is Beth.... and how many pills do you have to take? ...........
Beth<hr></blockquote>

Beth, at first you will probably take more pills, but as time goes on your body accepts the transplant more and more, and therefore the medication levels can be lowered.

For instance I was on:

500 ml Cellcept morning, and night
500 ml Gancyclovier morning, and night
20 ml of Prednisone every morning
500 ml Sporanox morning, and night
anywhere from 3-5 ml of FK506 morning and night

Compared to now:
250 ml Cellcept morning, and night
500 ml Gancyclovier mornings only
500 ml Sporanox nights only
10 ml of Prednisone every other day
1 ml FK506 mornings, and 1.5 nights

That's a bit different, and of course I also take Calcium, Magnisium, and vitamines which you should be taking now anyways. Remember CF patients don't absorbe all the nutrients from food that is eaten. I also still take Pancrease.

Just remember, everybody is different. Just because one person does one thing doesn't mean you will be doing the same.

Hope this helps
Denise