after transplant

beyerdug

New member
Your immune system is suppressed for the rest of your post transplant life. That is because your body will continue to try and rid itself of the new lungs. The lungs are foreign to your body and act like an antigen. Your bodies immune system will try and fight them off by creating an antibody. The immune suppressing drugs will help keep your body from creating that antibody, not only for the lungs but because the drugs aren't tailored specifically for the lungs, they will also limit the antibodies your system can create to fight off infections. You will also take a regimen of antibiotics, antifungals, steroids, and other drugs. Some people think they get a new lung and their life becomes normal. That is not so, life is what you make of it if you have cf or a lung transplant. Drugs and complications are just a part of life for us.

Doug
 

summer732

New member
That is not a dumb question at all. It is suppressed the most right after transplant. As you go on and there are no signs of rejection, they are able to lower the dosage of you immunosupression drugs. So, my immune system was much more suppressed in the months following my transplant than it is now, 2 years and 3 months later. You will never be completely off of anti rejection drugs but as long as you do well, you will be able to lower them. For example, I know someone over 10 years out of her transplant and she has never had an episode of rejection. She is down to 2 mgs of prednisone every other day.

Hope that helped!
 

summer732

New member
That is not a dumb question at all. It is suppressed the most right after transplant. As you go on and there are no signs of rejection, they are able to lower the dosage of you immunosupression drugs. So, my immune system was much more suppressed in the months following my transplant than it is now, 2 years and 3 months later. You will never be completely off of anti rejection drugs but as long as you do well, you will be able to lower them. For example, I know someone over 10 years out of her transplant and she has never had an episode of rejection. She is down to 2 mgs of prednisone every other day.

Hope that helped!
 

summer732

New member
That is not a dumb question at all. It is suppressed the most right after transplant. As you go on and there are no signs of rejection, they are able to lower the dosage of you immunosupression drugs. So, my immune system was much more suppressed in the months following my transplant than it is now, 2 years and 3 months later. You will never be completely off of anti rejection drugs but as long as you do well, you will be able to lower them. For example, I know someone over 10 years out of her transplant and she has never had an episode of rejection. She is down to 2 mgs of prednisone every other day.

Hope that helped!
 

eli

New member
Thanks for answering that. It sounds kind of scary and kind of risky, but surley a better chance at a normal and (breath easy)life.

Transplant patients are living longer and longer every year, its come a long way and i think the pros outweigh the cons in majority of cases.

Margaret, i'm glad to hear you doing well post transplant. Keep on fighting<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

eli

New member
Thanks for answering that. It sounds kind of scary and kind of risky, but surley a better chance at a normal and (breath easy)life.

Transplant patients are living longer and longer every year, its come a long way and i think the pros outweigh the cons in majority of cases.

Margaret, i'm glad to hear you doing well post transplant. Keep on fighting<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

eli

New member
Thanks for answering that. It sounds kind of scary and kind of risky, but surley a better chance at a normal and (breath easy)life.

Transplant patients are living longer and longer every year, its come a long way and i think the pros outweigh the cons in majority of cases.

Margaret, i'm glad to hear you doing well post transplant. Keep on fighting<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

nickster26

New member
I'm new to this website, so excuse me if I'm barging in!

Just replying to the transplant queries.

My sister died from lung failure, caused by CF, she was waiting for a transplant at the time. I don't mean to scare anyone but just letting you know my situation!

I attended many appointments with my sister, and one thing you must remember, is that although you may get a lung transplant, and have new lungs, it does not mean you no longer have CF as it affects other organs etc, so you may have made one part of you a bit better, but there are other parts that still do not work correctly.

A lung transplant will not cure anyone with CF, although hopefully, will extend some people's lives.

Good luck to anyone on the list now, or fighting to get on it. x x
 

nickster26

New member
I'm new to this website, so excuse me if I'm barging in!

Just replying to the transplant queries.

My sister died from lung failure, caused by CF, she was waiting for a transplant at the time. I don't mean to scare anyone but just letting you know my situation!

I attended many appointments with my sister, and one thing you must remember, is that although you may get a lung transplant, and have new lungs, it does not mean you no longer have CF as it affects other organs etc, so you may have made one part of you a bit better, but there are other parts that still do not work correctly.

A lung transplant will not cure anyone with CF, although hopefully, will extend some people's lives.

Good luck to anyone on the list now, or fighting to get on it. x x
 

nickster26

New member
I'm new to this website, so excuse me if I'm barging in!

Just replying to the transplant queries.

My sister died from lung failure, caused by CF, she was waiting for a transplant at the time. I don't mean to scare anyone but just letting you know my situation!

I attended many appointments with my sister, and one thing you must remember, is that although you may get a lung transplant, and have new lungs, it does not mean you no longer have CF as it affects other organs etc, so you may have made one part of you a bit better, but there are other parts that still do not work correctly.

A lung transplant will not cure anyone with CF, although hopefully, will extend some people's lives.

Good luck to anyone on the list now, or fighting to get on it. x x
 

nicolaj

New member
Thank you all for your information. just freaked me out abit when i saw the transplant doctor and that was said.i need to decide at the moment wether im well enough to have a transplant, but ill enough to need one? (hope that makes sense)
nicola xx
 

nicolaj

New member
Thank you all for your information. just freaked me out abit when i saw the transplant doctor and that was said.i need to decide at the moment wether im well enough to have a transplant, but ill enough to need one? (hope that makes sense)
nicola xx
 

nicolaj

New member
Thank you all for your information. just freaked me out abit when i saw the transplant doctor and that was said.i need to decide at the moment wether im well enough to have a transplant, but ill enough to need one? (hope that makes sense)
nicola xx
 

Mathews

New member
This month I will be post lung transplant 15 yrs. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I agree that a lung txp. does not "cure" cystic fibrosis. But I also agree that those nasty CF bugs are alive and well in the sinuses. My advise, listen to all your healthcare teams (including CF physician).
 

Mathews

New member
This month I will be post lung transplant 15 yrs. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I agree that a lung txp. does not "cure" cystic fibrosis. But I also agree that those nasty CF bugs are alive and well in the sinuses. My advise, listen to all your healthcare teams (including CF physician).
 

Mathews

New member
This month I will be post lung transplant 15 yrs. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I agree that a lung txp. does not "cure" cystic fibrosis. But I also agree that those nasty CF bugs are alive and well in the sinuses. My advise, listen to all your healthcare teams (including CF physician).
 

summer732

New member
15 years! You are an inspiration to us all.

Now going back to something that was said. No a transplant does not cure CF, but believe me, when your body is getting 100% Oxygen and you aren't fighting off constant infections, things just sort of fall into place.

I had my feeding tube inserted when I was 14 years old. I used that thing EVERY night, as many cans as I could squeeze in. Eventually, the feeding tube was simply there to sustain my life and maintain my weight. I was only 76 pounds at the time of transplant. When I woke up I was eating massive amounts of food (hospital food at that), when I left my appetite continued, and guess what, the weight followed as well.

I never used my feeding tube again after I had my transplant and about 3 weeks later, they pulled that sucker out! So yeah, my pancrease is still affected seeing as I have to still take enzymes and all, but I am digesting my food and my body is absorbing the calories I eat because I'm not fighting off infections. But I am currently a healthy 96.5 pounds (I'm only 4'11", my highest weight post transplant was 103).

I will say, when I get a cold, I still drop weight pretty quickly. The great thing is though, if you put your mind to it and eat, you can put it right back on. And yeah my sinuses are still affected, but I see an AMAZING sinus guy every two months, and I am crazy with the saline sprays. Helps to keep everything clear and clean!


This is my opinion: when it comes to transplant a positive attitude goes a long way. You can sit and read about everything that can go wrong, or all of the things you need to avoid...which is great and everyone going into a transplant should know that information. I think transplant is something that you really have to want. You have to want a better life, want to succeed and have an unbelievable will to live to fight through the tough times. My transplant has not come along without it's complications and I have a hard time when I talk to a friend who did not have such a great run with transplant (not a CFer). But I stay positive and forge ahead, because my life today, my ability to breathe, to work, to play, to laugh, to love has been 100 trillion times better than my best day with CF.

Just an FYI in the last two years some of my complications: acute rejection (two weeks post, handled with a high dose of steroids, hasn't been back since); airway narrowing (2 months post; bronchoscopy; ballooned open); bronchitis (4 months post transplant; my doctor believes I stressed myself out because I was moving back home from New Orleans; bronch; course of IVs); Nasal Polyps (a year post transplant; out of control!, surgery); Pneumonia (1 1/2 years post transplant developed from the Para influenza virus; significant drop in PFTS; hospital stay; two weeks IV; three week leave of absence from job); Sinus polyps again! (2 years post transplant; office procedure to pull them out); PFTs down from effects of para influenza virus (bump and taper on prednisone); just as I was getting better...I caught RSV (2 years 2 months post; drop in pfts; bronch; antibiotics); This brings me to now (2 years 4 months post)...just went back to the doctor, pfts up significantly, gained weight, cat scan shows improvement...however, there is a new "area of pneumonia" that was not on a previous cat scan...it is contained so I am on Levaquin and I have to go back in a month for repeat PFTs and Cat Scan. If all is well then wooohoo, if not then bronch me.

So that has been the last two years of my life. I don't know if that helps at all just to see what type of complications can come up. If I learned anything in the last two years it is HANDWASHING; HANDWASHING; HANDWASHING!

So for all of you out there considering transplant, on the waiting list, or just transplanted STAY POSITIVE and keep pushing!
 
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