Question

[randomgirl]

I posted this a few days ago but my post got transferred to the "Transplants" board and I only got one response. Anyways...<span style="font-size: small;">I'm on the list for a double lung and liver transplant. I was wondering if there is a list of things that a transplant patient cannot do or have after the transplant? I know that patients can't eat grapefruit and should avoid big crowds. I'm sure there's things that I should avoid due to the immunosuppressants but I'm not sure what that would be.

 

[randomgirl]

I posted this a few days ago but my post got transferred to the "Transplants" board and I only got one response. Anyways...<span style="font-size: small;">I'm on the list for a double lung and liver transplant. I was wondering if there is a list of things that a transplant patient cannot do or have after the transplant? I know that patients can't eat grapefruit and should avoid big crowds. I'm sure there's things that I should avoid due to the immunosuppressants but I'm not sure what that would be.

 

[fly30]

Sorry, I have no answers to your question as I only have a young child with CF. I was just shocked to see that you are only 23 and already on the transplant list for both lungs and liver. Why is that? Have you always had lung/liver issues? I mean ever since you were young? How old we're you when you were diagnosed. Sorry for all the questions. Only answer if want to.
Wishing you all the very best and hoping you get your transplant soon.

 

[fly30]

Sorry, I have no answers to your question as I only have a young child with CF. I was just shocked to see that you are only 23 and already on the transplant list for both lungs and liver. Why is that? Have you always had lung/liver issues? I mean ever since you were young? How old we're you when you were diagnosed. Sorry for all the questions. Only answer if want to.
Wishing you all the very best and hoping you get your transplant soon.

 

[fly30]

Meranda, that's really scary to hear. My biggest fear is that my child can come down with something after being so healthy and then just decline so rapidly, as well as being unable to bounce back.
We have tried so hard and have been well so far, but much of it is out of our control and that scares the crap out of me.
Guess we can just hope for better treatments som day real soon.
Take care <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[fly30]

Meranda, that's really scary to hear. My biggest fear is that my child can come down with something after being so healthy and then just decline so rapidly, as well as being unable to bounce back.
We have tried so hard and have been well so far, but much of it is out of our control and that scares the crap out of me.
Guess we can just hope for better treatments som day real soon.
Take care <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[randomgirl]

I don't mind any questions. I was diagnosed with CF before I was born actually. My older sister and I have the same mutation but for some reason I started to have liver problems when I was around 9 years old and she has no liver problems thankfully. When I was about 17 my liver really started to get worse and so my liver and lung function declined ever since. The doctors don't know why I've had liver problems though.

 

[randomgirl]

I don't mind any questions. I was diagnosed with CF before I was born actually. My older sister and I have the same mutation but for some reason I started to have liver problems when I was around 9 years old and she has no liver problems thankfully. When I was about 17 my liver really started to get worse and so my liver and lung function declined ever since. The doctors don't know why I've had liver problems though.

 

[Havoc]

I would suggest a simple Google search for information about post transplant life.

 

[Havoc]

I would suggest a simple Google search for information about post transplant life.

 

[eganhouselisa]

Hi randomgirl!
I am a 34 year old with CF since birth and had a liver transplant 5 years ago. It was VERY hard to find any information for LIVER transplants and CF (plenty of information about LUNG transplants) on Google, etc. Heck, many doctors I talk to (like my new diabetes doc didn't even know CF could cause liver problems (A morbid thought, but I think many people haven't heard abou the liver problems because it happens to only like 5-10% of people with CF and people with CF never used to live long enough to get the liver problems!)
Anyway, life after transplant is GREAT now, but the first year was very rough with recurring infections causing hospitalizations.There's notanythingI can think of that I haven't been able to do post-transplant. It's just important to all the "good sutff" to stay healthy - exercise, eat well, use sunscreen, take your anti-rejection meds, etc. Yeah, I was told abou the grapefruit thing, but that's not very limiting (for me anyway - if I couldn't eat meat and potatoes, that would be another story!) The antirejection drugs did cause high blood pressure (which I never had pre-transplant), but I just take a blood pressure pill and it's ok now.
If you want to email me, I can give you my phone number and you can ask questions if you want to. I wish so much I would've had someone to talk to! (I'm really easy going and friendly!)My email is <a href="mailto:lisacantwell1212@gmail.com">lisacantwell1212@gmail.com</a>
I hope you are doing well despite your circumstances!
Take care,
Lisa

 

[eganhouselisa]

Hi randomgirl!
I am a 34 year old with CF since birth and had a liver transplant 5 years ago. It was VERY hard to find any information for LIVER transplants and CF (plenty of information about LUNG transplants) on Google, etc. Heck, many doctors I talk to (like my new diabetes doc didn't even know CF could cause liver problems (A morbid thought, but I think many people haven't heard abou the liver problems because it happens to only like 5-10% of people with CF and people with CF never used to live long enough to get the liver problems!)
Anyway, life after transplant is GREAT now, but the first year was very rough with recurring infections causing hospitalizations.There's notanythingI can think of that I haven't been able to do post-transplant. It's just important to all the "good sutff" to stay healthy - exercise, eat well, use sunscreen, take your anti-rejection meds, etc. Yeah, I was told abou the grapefruit thing, but that's not very limiting (for me anyway - if I couldn't eat meat and potatoes, that would be another story!) The antirejection drugs did cause high blood pressure (which I never had pre-transplant), but I just take a blood pressure pill and it's ok now.
If you want to email me, I can give you my phone number and you can ask questions if you want to. I wish so much I would've had someone to talk to! (I'm really easy going and friendly!)My email is <a href="mailto:lisacantwell1212@gmail.com">lisacantwell1212@gmail.com</a>
I hope you are doing well despite your circumstances!
Take care,
Lisa

 

[fly30]

Was wondering with the liver transplant...... You can't have a live donor??? Ie such as a family member like mum etc

 

[fly30]

Was wondering with the liver transplant...... You can't have a live donor??? Ie such as a family member like mum etc

 

[eganhouselisa]

Actually, you CAN have a living liver donor!!!! A lot of people don't know about this though. It is much more rare for someone to donate their liver as compared tofor example, a kidney. The liver is the only organ that regenerates itself.
My living donor was Cindy, who was about 50 years old and mom of 6 kids (all over the age of 16)at the time she gave me half of her liver.
No one in my family was a match. I was on the list, but time was running out, no cadaver livers were becoming available and Cindy offered. Cindy was/is my Mom's best friend since grade school.
Living liver donor tranpslants are risky and I know some centers don't even do them. I had mine done at the Univeristy of MInnesota Medical Center Fairview, but I know The University of Iowa Hospitals and Clinics (I worked there for 2 years) doesn't do them.
Fortunately for us, everything turned out fine. Cindy had problems with nausea from the anesthesia, but that's about it. She was in the hospital for about 3-4 days andlaid up for a bit (3 weeks?) and has a small scar,but is fine now. Cindy did have to go through a BIG work up (blood tests, x-rays, MRIs, ultrasounds, heart tests, lung function, etc.) to make sure she was completely healthy and strong to go into surgery. I do know there are pretty strict restrictions on who can be a living donor. Don't quote me exactly, but the donor has to be VERY healthy and have a history of greathealth (no smoking, drugs, alcohol (of very little), no "harsh" meds, no cancer, chemo, not overweight, etc.).
If you are considering a living donor(<em>and the donor is considering being a living donor</em>)I would ask your doctor. For example, if someone used to smoke a little bit 20 years ago, or drank a bit in college, or is on a few meds, like blood pressure meds or something, don't let what I said above rule them out. I'm not a physician and don't know all the strict rules that could make someone inelegible to be a living donor).
Living donation is a WONDERFUL thing - I'm here today because of it!
Lisa

 

[eganhouselisa]

Actually, you CAN have a living liver donor!!!! A lot of people don't know about this though. It is much more rare for someone to donate their liver as compared tofor example, a kidney. The liver is the only organ that regenerates itself.
My living donor was Cindy, who was about 50 years old and mom of 6 kids (all over the age of 16)at the time she gave me half of her liver.
No one in my family was a match. I was on the list, but time was running out, no cadaver livers were becoming available and Cindy offered. Cindy was/is my Mom's best friend since grade school.
Living liver donor tranpslants are risky and I know some centers don't even do them. I had mine done at the Univeristy of MInnesota Medical Center Fairview, but I know The University of Iowa Hospitals and Clinics (I worked there for 2 years) doesn't do them.
Fortunately for us, everything turned out fine. Cindy had problems with nausea from the anesthesia, but that's about it. She was in the hospital for about 3-4 days andlaid up for a bit (3 weeks?) and has a small scar,but is fine now. Cindy did have to go through a BIG work up (blood tests, x-rays, MRIs, ultrasounds, heart tests, lung function, etc.) to make sure she was completely healthy and strong to go into surgery. I do know there are pretty strict restrictions on who can be a living donor. Don't quote me exactly, but the donor has to be VERY healthy and have a history of greathealth (no smoking, drugs, alcohol (of very little), no "harsh" meds, no cancer, chemo, not overweight, etc.).
If you are considering a living donor(<em>and the donor is considering being a living donor</em>)I would ask your doctor. For example, if someone used to smoke a little bit 20 years ago, or drank a bit in college, or is on a few meds, like blood pressure meds or something, don't let what I said above rule them out. I'm not a physician and don't know all the strict rules that could make someone inelegible to be a living donor).
Living donation is a WONDERFUL thing - I'm here today because of it!
Lisa

 

[eganhouselisa]

by the way ---- post transplant life did not stop me from getting married, earning my Masters in Healthcare Administration degree and I am still able to work full time and travel and have a dog and family I love!!! As I metnioned it was rough for a year or 2 right afterwards, but us CFers are tough! You will get through it!!!! <img title="Tongue out" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-tongue-out.gif" alt="Tongue out" border="0" />

 

[eganhouselisa]

by the way ---- post transplant life did not stop me from getting married, earning my Masters in Healthcare Administration degree and I am still able to work full time and travel and have a dog and family I love!!! As I metnioned it was rough for a year or 2 right afterwards, but us CFers are tough! You will get through it!!!! <img title="Tongue out" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-tongue-out.gif" alt="Tongue out" border="0" />

 

[randomgirl]

I actually did research this stuff on Google and still couldn't find much information on it. But thank you so much Lisa for all of that info. I'm just curious though, did you also have a double lung transplant since you have cf? That may seem like a stupid question but your profile didn't mention about the lungs. But I don't think my doctors do a living donor for liver...at least not in my case.

 

[randomgirl]

I actually did research this stuff on Google and still couldn't find much information on it. But thank you so much Lisa for all of that info. I'm just curious though, did you also have a double lung transplant since you have cf? That may seem like a stupid question but your profile didn't mention about the lungs. But I don't think my doctors do a living donor for liver...at least not in my case.