INFO. ON LUNG TRANSPLANTS

[MANDI]

I AM FAIRLY NEW TO THIS FORUM BUT VERY THANKFUL TO HAVE FOUND IT. I AM 32 YRS. OLD., HAPPILY MARRIED FOR 5 1/2 YRS., NO CHILDREN. MY QUESTION IS CONCERNING LUNG TRANSPLANTS; MY CF SPECIALIST & PULMONOLOGIST HAVE BEEN MENTIONING TRANSPLANTS ALOT LATELY BUT I AM SCARED TO DEATH OF THE THOUGHT OF HAVING IT DONE , MAINLY THE MENTAL ASPECT OF IT. ANYONE WHO HAS HAD TRANSPLANTS, PLEASE TELL ME ABOUT YOUR EXPERIENCES WITH AS MUCH DETAIL AS POSSIBLE PLEASE?????????? FEEL FREE TO SEND ME PRIVATE MESSAGES IF YOU PREFERE. THANKS!!!!!!!!!


MANDI 32 W/ CFRD

 

[anonymous]

check the Translant section under Topic Specific, it might have alot of the info that you want

 

[anonymous]

I had a lung transplant just over 2-1/2 years ago. I would not say it is the easiest thing I have ever done but I can tell you it is the best thing I have done. I never knew what it was like to feel normal. I could not believe what it felt like to breath, I mean really breath. I remember the assessment and they kept tellling me that I would have to learn to breath again as my body would not know how to use my whole lung to breath. I would be breathing along and then suddenly be breath in short little breaths and then someone would remind me to take a deep breath. I am now doing it without even thinking. This transplant has made such a differnce in my life I went from being practically bed ridden to now being a personal trainer!! I went into this experience knowing that I could do it and that I would be ok, I believe everything is mind over matter. Anyways as to the mental aspect, I did not find it difficult at all. People think that it is such an awful thing that someone has died for me to live. I have always seen it that they would have died regardless of me and that be giving this amazing gift my family did not have to suffer as they did. I have been in contact with the family (thorugh letteres) and they feel the same. I think you need to really make peace with that notion. I was married a month ago and we incorporated my donor into my wedding by lighting a candle to burn in remembrance of her during the entire ceremony. As I feel I am sharing my world with her now and if it weren't for her that I would not be here.

I could tell you hours of stories but the most important thing I can tell you is it is the best thing I have done it my entire life. I feel amazing and I would do it againg tommorrow if I had to.

Sara

 

[anonymous]

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

I had a lung transplant just over 2-1/2 years ago. I would not say it is the easiest thing I have ever done but I can tell you it is the best thing I have done. I never knew what it was like to feel normal. I could not believe what it felt like to breath, I mean really breath. I remember the assessment and they kept tellling me that I would have to learn to breath again as my body would not know how to use my whole lung to breath. I would be breathing along and then suddenly be breath in short little breaths and then someone would remind me to take a deep breath. I am now doing it without even thinking. This transplant has made such a differnce in my life I went from being practically bed ridden to now being a personal trainer!! I went into this experience knowing that I could do it and that I would be ok, I believe everything is mind over matter. Anyways as to the mental aspect, I did not find it difficult at all. People think that it is such an awful thing that someone has died for me to live. I have always seen it that they would have died regardless of me and that be giving this amazing gift my family did not have to suffer as they did. I have been in contact with the family (thorugh letteres) and they feel the same. I think you need to really make peace with that notion. I was married a month ago and we incorporated my donor into my wedding by lighting a candle to burn in remembrance of her during the entire ceremony. As I feel I am sharing my world with her now and if it weren't for her that I would not be here.



I could tell you hours of stories but the most important thing I can tell you is it is the best thing I have done it my entire life. I feel amazing and I would do it againg tommorrow if I had to.



Sara</end quote></div>


how much did it cost you?

 

[IG]

like others have said check the transplants topics, also you might want to use the search function on this site for transplants.
I can't really answer anything without a definite question.

As for how much it costs, mine was about 250,000.

 

[thelizardqueen]

I thank god that in Canada you don't have to pay for transplants. Wish it were the case for wherever you live.

 

[anonymous]

I understand. Look at me web site there is a lot of info there.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.lungs4kyle.net
">http://www.lungs4kyle.net
</a>
Hope this will help you feel better.

 

[MANDI]

THANK YOU GUYS FOR ALL THE INFO. I AM STARTING TO BE MORE OPEN MINDED ABOUT IT NOW. JUST TO THINK OF BREATHING WITH MY FULL LUNG CAPACITY SOUNDS WONDERFULLY AMAZING!!!! BLESS YOU ALL!!!!!!!!!

 

[Faust]

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

I had a lung transplant just over 2-1/2 years ago. I would not say it is the easiest thing I have ever done but I can tell you it is the best thing I have done. I never knew what it was like to feel normal. I could not believe what it felt like to breath, I mean really breath. I remember the assessment and they kept tellling me that I would have to learn to breath again as my body would not know how to use my whole lung to breath. I would be breathing along and then suddenly be breath in short little breaths and then someone would remind me to take a deep breath. I am now doing it without even thinking. This transplant has made such a differnce in my life I went from being practically bed ridden to now being a personal trainer!! I went into this experience knowing that I could do it and that I would be ok, I believe everything is mind over matter. Anyways as to the mental aspect, I did not find it difficult at all. People think that it is such an awful thing that someone has died for me to live. I have always seen it that they would have died regardless of me and that be giving this amazing gift my family did not have to suffer as they did. I have been in contact with the family (thorugh letteres) and they feel the same. I think you need to really make peace with that notion. I was married a month ago and we incorporated my donor into my wedding by lighting a candle to burn in remembrance of her during the entire ceremony. As I feel I am sharing my world with her now and if it weren't for her that I would not be here.



I could tell you hours of stories but the most important thing I can tell you is it is the best thing I have done it my entire life. I feel amazing and I would do it againg tommorrow if I had to.



Sara</end quote></div>



You are an awesome lady. The thought does freak me out beyond belief though. Some things just give me the heebie jeebies, this is one of those things.

 

[Joanne]

Mandi,

Lung tx is amazing and scarey. Why not? It is nearly getting yourself cut in half!!! But you know what, you are asleeep, you are not aware of it. Let the surgeons do what they are experts at, and you will be able to enjoy years of good health.. that is the main thing.

My life has totally turned around, or begun really. I was shy, introverted, and not able to do a whole lot pre tx. Now, you will find me running, walking, biking, hiking, swimming, playing Volleyball, driving motorcycles, driving farm tractors, working volunteering, speaking, in the Transplant Games - in a few weeks I am going to Louisville Kentucky, I will be doing the 1500m race walk, 400m run, and volleyball at the 2006 Tx Games.

Keep asking questions, do look into tx, and see what it is about. We all were scared, but I was more scared of dying with CF.

You can email me anytime
luckylungsforjo@aol.com

Or check out my web site too.
Joannne

 

[Joanne]

Liz,
I love living in the U.S.

I think it was misunderstood about the cost of the lung tx.

I am not definite, but whomever said their tx was $250,000, I bet meant that is what it cost their insurance. Most of us in the U.S. are working folks, who could never afford that type of payment.

My lung tx cost just about $986,000 dollars... Thank goodness I live in the U.S. and I can buy my own health insurance that covers what I need it to cover. My insurance paid it all and they continue to pay for my 86,000 dollars a year of medicine.

There are many myths out there about the health care in the U.S. - most have some untruth to them.

Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

I am a little confused about the whole transplant thing...do you still have cf after the transplant? Does it affect the new lungs as it did the old?...just get to start with a healthy pair?

 

[Joanne]

The new lungs do not have CF.

Remember, CF is a genetic illness, so it is in your DNA.
So the new lungs cannot "catch" CF,, grow it, or get it any way. Those CF lungs are gone for good. The rest of you has the CF though.

For me personally, I had some minor sinus issues pre tx, I no longer have them.
I take enzymes. I did pre tx.
My sister however, who took enzymes pre tx, no longer needed them post tx. Sometimes for some people that improves and that is a thing of the past.

Joanne Schum

 

[anonymous]

wow...I was not aware of that. I though it was in your body and no matter if you had a transplant or not it would just go ahead and do the same thing.
So how come this is not a more common thing for cfer's?...or is it?

 

[anonymous]

You may get a lung infection from time to time, who doesn't. But your new Lungs DO NOT have CF nor will thay take on the traits. They were made by some one else; with non CF DNA.

It is tradeing one set of issues for another. I find this set of circumstances easier to mantain, easier to breath, more freedom. My CF lungs became un treatable.

 

[IG]

So how come this is not a more common thing for cfer's?...or is it?

It's a last resort.
Why? Because when you have a lung tx, you take on a whole different set of issues and problems. Not to mention the fact that it's a pretty major and serious surgery. This does put a strain on your body and I believe, at least when I had mine, there is an average life extension of about 5 years post transplant. You're also on immunosuppressants for the rest of your life, Which means you are more prone to getting sick and catching bugs that other people have. So while a CFer might have say 10 years with their original set of lungs if nothing goes wrong, if you just randomly give them a transplant that goes down so they might only have 2 or so years with the new lungs. But then again nothing is for certain so you never know. Though if it ain't seriously broke, don't fix it always seems to apply in certain circumstances.

 

[Joanne]

Lots of good info is being shared here.

You will never had CF lungs again, but you might get rejection, or infection and make it feel a little like CF, sound like CF, cough like CF, but it is not CF.

I have had 4 colds in 9 years. I think one of them I had a cough... it was really nothing. The colds only lasted about 3 or 4 days, with barely any symptoms.

When I went into Chronic rejection, I was coughing up stuff, not like CF though, and was short of breath sometimes and also my pulmonary functions declined to 25%. But thank goodness for some great new drugs... I am now up to 64% and feel great, do not cough, not short of breath. I run and bike and walk every day.

Why don't more people with CF get a tx? Wow... who wants it really? I mean ideally we want to avoid it, live with our lungs, and live healthy, happy and long. But CF prevents that for many of us. Surgery is risky, there are possible complications, the side effects of the meds can be challenging, and infection and rejection are a risk to our health. So no doc wants it done until all other options are exhausted.

Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

Thanks for the info I understand why it is th last resort... why not try to live with your own for as long as possible...I am still a little confused as to how you don't have cf anymore...I mean I belive everyone but I ju though it was a gene in your body and it stops the lungs from functioning and even if you put new ones in the same thing would happen... I am glad I found the real info on this. Thanks

 

[thelizardqueen]

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



I am not definite, but whomever said their tx was $250,000, I bet meant that is what it cost their insurance. Most of us in the U.S. are working folks, who could never afford that type of payment.</end quote></div>

I have a friend in the states, who had to raise money for their lung transplant. That's why I'd glad I'm not in the US. What happens to people who don't have insurance? Here in Canada, the government pays for procedures such as this.

 

[Emily65Roses]

What happens to people who don't have insurance? Or if you have insurance that won't cover it? Like Allan? You die. End of story.

Lovely, isn't it?