waiting for tx...have questions

[summer732]

Hello everyone
I am new to this site. So first I thought I would introduce myself. My name is Margaret and I'm 21 years old. I was diagnosed with cf when I was three months old and I'm currently waiting for a double lung transplant. I've been listed since January and really started to read the posts on this site this summer. I am currently taking a leave of absence from school (I am currently missing my senior year of college) to get the transplant. I guess since I have so much time on my hands I have a whole lot of time to think. I was just wondering if there are others who have been through this maybe you can share your experiences with me. Even if we could e-mail that would be great. I have talked to many people who are post lung transplant, all with cf, and they are all doing wonderful! But I find that I can never talk to enough people about it to ease my worrying! I'm really looking for a female perspective on this too (no offense guys, but sometimes us females worry about different things)! Thanks in advance for your replies. Hope to hear from you soon!
Margaret

 

[summer732]

Hello everyone
I am new to this site. So first I thought I would introduce myself. My name is Margaret and I'm 21 years old. I was diagnosed with cf when I was three months old and I'm currently waiting for a double lung transplant. I've been listed since January and really started to read the posts on this site this summer. I am currently taking a leave of absence from school (I am currently missing my senior year of college) to get the transplant. I guess since I have so much time on my hands I have a whole lot of time to think. I was just wondering if there are others who have been through this maybe you can share your experiences with me. Even if we could e-mail that would be great. I have talked to many people who are post lung transplant, all with cf, and they are all doing wonderful! But I find that I can never talk to enough people about it to ease my worrying! I'm really looking for a female perspective on this too (no offense guys, but sometimes us females worry about different things)! Thanks in advance for your replies. Hope to hear from you soon!
Margaret

 

[RadChevy]

Margaret,
You are right, females have some issues about post tx that the guys do not have. And I guess the same could be said for the guys.

I am post lung tx due to CF 7 years, and my older sister is post lung tx 3 years. Both doing well, both have had some bumps, which are very common, but manageable.

I am not sure what you would like to hear about, or where your concerns lie at this time. The process is long and your concerns will change throughout it. Please feel free to email me anytime...

luckylungsforjo@aol.com
I also have web site for Transplant support you might want to check out.
http://groups.msn.com/TransplantSupportLungHeartLungHeart
What center are you considering? Are you on Oxygen? Do you do any physical therapy?

Joanne Schum
luckylungsforjo@aol.com

 

[RadChevy]

Margaret,
You are right, females have some issues about post tx that the guys do not have. And I guess the same could be said for the guys.

I am post lung tx due to CF 7 years, and my older sister is post lung tx 3 years. Both doing well, both have had some bumps, which are very common, but manageable.

I am not sure what you would like to hear about, or where your concerns lie at this time. The process is long and your concerns will change throughout it. Please feel free to email me anytime...

luckylungsforjo@aol.com
I also have web site for Transplant support you might want to check out.
http://groups.msn.com/TransplantSupportLungHeartLungHeart
What center are you considering? Are you on Oxygen? Do you do any physical therapy?

Joanne Schum
luckylungsforjo@aol.com

 

[IG]

I know I'm a bit younger than you, and I only had my tx more than a year ago, but feel free to ask me any questions. My email is... immortalgoddezz@hotmail.com

 

[IG]

I know I'm a bit younger than you, and I only had my tx more than a year ago, but feel free to ask me any questions. My email is... immortalgoddezz@hotmail.com

 

[AbsintheSorrow]

I never thought of that... I'm not waiting on a tx yet, but now I'm curious.. what problems do females have post tx that guys don't?

 

[AbsintheSorrow]

I never thought of that... I'm not waiting on a tx yet, but now I'm curious.. what problems do females have post tx that guys don't?

 

[summer732]

Hey Emily-
I'm not sure if we have different problems...I just think we have different concerns. I know that I have concerns about post-transplant things that a male may not even think about.

 

[summer732]

Hey Emily-
I'm not sure if we have different problems...I just think we have different concerns. I know that I have concerns about post-transplant things that a male may not even think about.

 

[AbsintheSorrow]

I'd love to hear any different problems or concerns, anything of the like, if anyone cares to share. Like I said, I'm not looking at a tx yet, but I do think about all the pros and cons about it, and the wider range of information I have, the better.

 

[AbsintheSorrow]

I'd love to hear any different problems or concerns, anything of the like, if anyone cares to share. Like I said, I'm not looking at a tx yet, but I do think about all the pros and cons about it, and the wider range of information I have, the better.

 

[anonymous]

Hey margaret,

I know a lot of females have problems with their cycles after tx, I have heard this from a few of the female patients, i am not sure to what extent. but I know with myself I have had continuous heavy bleeding since my tx. I am coming up to my 2 year anniversary in decemeber, and I am scheduled to have a full hysterectomy on the 1st of dec.
I have tried everything to stop the bleeding, from accupuncture, through to going on the pill, to having a D&C but all to no avail. So I am left with no choice but to have it all removed. I also have had cysts on my ovaries grow since tx, and I will need to have them removed as well, the surgeon is going to try and save my left ovary to save me from having to undergo HRT but as of yet they are not sure if this will be an option.
So thats my story anyway,

~Tracy~

 

[anonymous]

Hey margaret,

I know a lot of females have problems with their cycles after tx, I have heard this from a few of the female patients, i am not sure to what extent. but I know with myself I have had continuous heavy bleeding since my tx. I am coming up to my 2 year anniversary in decemeber, and I am scheduled to have a full hysterectomy on the 1st of dec.
I have tried everything to stop the bleeding, from accupuncture, through to going on the pill, to having a D&C but all to no avail. So I am left with no choice but to have it all removed. I also have had cysts on my ovaries grow since tx, and I will need to have them removed as well, the surgeon is going to try and save my left ovary to save me from having to undergo HRT but as of yet they are not sure if this will be an option.
So thats my story anyway,

~Tracy~

 

[RadChevy]

Emily,
Well the most obvious issue for females is "can I have a baby post tx?"
Also there are "appearance issues". Image issues might arise. You might have a "moon face", you might be fat in one area, but thin in another.

Yes, your period might get sort of out of shape, and some more surgery could evolve, but for the most part, it is the trauma of the surgery that messes that up and it eventually gets back into shape.

Hair loss and hair growth.... guys have this too, but for women it is a bigger issue. Some of the post tx meds can make you grow hair ( on all parts of your body) while others may cause some hair loss. Again, most of that hair issue is temporary, or it can be dealt with, but it is a viable concern.

Those are just some of the issues that women face post tx, and it is a concern. But as I tell the folks that ask me about it... yes they are real concerns and worth talking and discussing and asking your team about, there might be help for the side effects, but they are WORTH IT!!! The ability to breathe is so wonderful, that these side effects take a back seat pretty fast.

Joanne Schum
luckylungsforjo@aol.com

 

[RadChevy]

Emily,
Well the most obvious issue for females is "can I have a baby post tx?"
Also there are "appearance issues". Image issues might arise. You might have a "moon face", you might be fat in one area, but thin in another.

Yes, your period might get sort of out of shape, and some more surgery could evolve, but for the most part, it is the trauma of the surgery that messes that up and it eventually gets back into shape.

Hair loss and hair growth.... guys have this too, but for women it is a bigger issue. Some of the post tx meds can make you grow hair ( on all parts of your body) while others may cause some hair loss. Again, most of that hair issue is temporary, or it can be dealt with, but it is a viable concern.

Those are just some of the issues that women face post tx, and it is a concern. But as I tell the folks that ask me about it... yes they are real concerns and worth talking and discussing and asking your team about, there might be help for the side effects, but they are WORTH IT!!! The ability to breathe is so wonderful, that these side effects take a back seat pretty fast.

Joanne Schum
luckylungsforjo@aol.com

 

[supermanfan]

Hello, my name is Denise, and I'm post tx 7 years almost 8. I never had any concerns. I think the biggest thing for some women is that Prednisone causes some hair growth in the face. I didn't get any problems from it. Prednisone also caused water retention so your face can be much rounder hense the name moon face... but that can happen with men too. Prednisone also can cause a diabetes (sp) in both male and female. I think the biggest worry for women is probably the facial hair growth that isn't normal for women. There is always electrolasis, but hopefully you are lucky like me, and don't ever have the problem.

One of the other major issues is pregnancy post tx. But come on, it would also be difficult pre tx as well especially if you are sick. The baby would push up on the diaphram, and therefore push on the lungs causing a smaller volume. But, I've been talking with a medical doctor that specialized in pregancies with issues, such as women on medicine, heart problems, and diabetes (sp) There have been women that have had a baby after tx, so there is hope.. it just if very new for the lung tx patients, and there is more research for kidney tx, and heart tx patients.

 

[supermanfan]

Hello, my name is Denise, and I'm post tx 7 years almost 8. I never had any concerns. I think the biggest thing for some women is that Prednisone causes some hair growth in the face. I didn't get any problems from it. Prednisone also caused water retention so your face can be much rounder hense the name moon face... but that can happen with men too. Prednisone also can cause a diabetes (sp) in both male and female. I think the biggest worry for women is probably the facial hair growth that isn't normal for women. There is always electrolasis, but hopefully you are lucky like me, and don't ever have the problem.

One of the other major issues is pregnancy post tx. But come on, it would also be difficult pre tx as well especially if you are sick. The baby would push up on the diaphram, and therefore push on the lungs causing a smaller volume. But, I've been talking with a medical doctor that specialized in pregancies with issues, such as women on medicine, heart problems, and diabetes (sp) There have been women that have had a baby after tx, so there is hope.. it just if very new for the lung tx patients, and there is more research for kidney tx, and heart tx patients.

 

[anonymous]

Hey Margaret, my name is Meranda. I am also 21 years old with CF and CF related diabetes. My email address is Thornsgirl@nc.rr.com I would like to chat sometime. I also have AOL Instant messanger, ThornsgirlNC.
Looking forward to chatting with you
Meranda

 

[anonymous]

Hey Margaret, my name is Meranda. I am also 21 years old with CF and CF related diabetes. My email address is Thornsgirl@nc.rr.com I would like to chat sometime. I also have AOL Instant messanger, ThornsgirlNC.
Looking forward to chatting with you
Meranda