Gangstagurl5858
New member
Has anyone had a transplant cuz the doctor said i need one i was just wondering if someone whos had knows what i should expect and how i will feel after the transplant??
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Has anyone had a Lung Transplant??
- Thread starter Gangstagurl5858
- Start date
Dear all, I have not had a transplant, but I know approximately 4 people who have had them. I am also currently testing to see if I'm able to get a transplant. The testing probably depends on where you go, and I'm going to the Cleveland Clinic for testing. It is a long and drawn out process and it really wears you down sometimes because it's appointments from 8 in the morning till 5 in the afternoon, for three days in a row. It isn't always that way, but that is how i've done two sessions of testing. They make you do a lot of annoying things like a PFT everytime you go there... it gets old, but it is worth it.
As I said before I know several people who are post-transplant, and they are all doing great! They said the weirdest part is not having to cough, because you will do what you are used to doing, then expect to cough, and not have to. I hear that takes a little while to get used to. But they are all doing great. They have to go back every month or so for testing but they are healthy, gaining weight normally, off all the medications except anti-rejection ones, and are loving life.
The one person I know now rides their bicycle alot, because they can. The other plays the flute, so as you can tell, there are some major differences. I don't know how close it is to "normal people" but hey, we don't wanna be normaly anyway do we?
If you ever have more questions, feel free to give me a buzz, I know a lot of people with cf, and am usually free to talk!
I hope this helped,
Sincerely,
Bryan
As I said before I know several people who are post-transplant, and they are all doing great! They said the weirdest part is not having to cough, because you will do what you are used to doing, then expect to cough, and not have to. I hear that takes a little while to get used to. But they are all doing great. They have to go back every month or so for testing but they are healthy, gaining weight normally, off all the medications except anti-rejection ones, and are loving life.
The one person I know now rides their bicycle alot, because they can. The other plays the flute, so as you can tell, there are some major differences. I don't know how close it is to "normal people" but hey, we don't wanna be normaly anyway do we?
If you ever have more questions, feel free to give me a buzz, I know a lot of people with cf, and am usually free to talk!
I hope this helped,
Sincerely,
Bryan
It must be an odd yet fantastic feeling... to say......do an activity that would normally put U into a coughing frenzy, but with the new lungs U dont. How awesome is that.....it makes me think of the first Peter Parker realized he could climb walls in Spiderman......he climbed, leaped, jumped, yelled & had such a feeling of freedom! Thats the type of freedom/feeling I envision~!
I had two double lung transplants. I had my first one ten years ago. I had my second one July 25, 2005. I sailed through my first transplant and was out in ten days. I was walking slowly in the ICU on the second day. They just moved me fast and I also moved myself too. I would say that my hopsitalization was a piece of cake compared to my second transplant. Funny thing, I was much sicker going into my first transplant than my second one. My second transplant I had to have a trach and had to walk on a ventilator. After two days of walking on the vent I was taken off the vent. I pushed myself and lost the fear of the vent which really helped to get me motivated. AS soon as I started walking I was out in two weeks. I am now going on five months post transplant and I will say that my recovery is much better than the first time. go figure. I say do what the doctors suggest, exercise and exercise!! Eat lots of good foods to try and gain some weight and try and get your sleep. Once you are listed keep busy and do not pay attention or think about the transplant. There will be no more congestion in your lungs. You will be able to do all the exercise (given time to heal of course) and travel and be free of the cF lung disease. Yes if cF affects other parts of your body those will remain. Nobody can tell you how you will feel as every patient might experience something different but you will see for yourself and I am sure it will be a positive experience. Be open minded and always take your medications. Whenver you have a question write them down and ask your transplant coordinator.
Take care
Risa
visit <a target=new class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a>
Take care
Risa
visit <a target=new class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a>
Hi Gangstagurl,
Good luck with your lung transplant evaluation. It is not easy testing and the centers vary on if you are in patient or can do it out patient. After getting listed is the wait and that sometimes proves to be the hardest part. You keep getting sicker and you just are clueless when you will get called.
My lung tx was 9/12/97 at Univ of North Carolina Chapel Hill.
The feeling afterward can vary in time that you start to 'FEEL GREAT". What helps most is working out pre tx and getting your muscles, bones, heart and lungs in the best shape you can. This helps you get through the surgery and also recovery.
After tx you might be shocked that you will get pounded on your back for a couple days... I know I nearly kicked the Physical therapist out of my room telling him he had the wrong room, as I had new lungs that require no pounding. Well their is fluid to get out so it all made sense once he explained.
There will be some pain, but most centers are great at pain control. The less pain you have, the more working out you will do.
The medicines will be watched closely and adjusted so that your blood levels are where they should be. There sometimes are some "bumps" post tx and we get use to that and the doctors get them smoothed out.
Having fun, living out your dream adventures are all part of the post tx life.
I wrote a book "Taking Flight- Inspirational Stories of Lung Transplantation" which 265 people submitted their stories of success. If you want more details, just email me.
As far as what I do for exercise.... I am now walking 2 miles a day and moving up fast to 3 miles. I have run in the past, and in fact a the 2000 Transplant Games I ran the 1/4 mile. I have cut back on the running as I think I am getting bad knees from it. I also played volleyball in the 2000 and 2002 games. This coming year at the games I will be speed walking, badmiton, volleyball, and maybe biking.
There is so much to do with great new lungs. I wish it would snow more ( I live in New York) so I could shovel... I adore shoveling snow and raking leaves.
Let me know if I can be of help. Stop at my web site for lots of resources and support\
<a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart
">http://groups.msn.com/TransplantSupportLungHeartLungHeart
</a>
Joanne Schum
luckylungsforjo@aol.com
Tx 9/12/97 due to CF
Good luck with your lung transplant evaluation. It is not easy testing and the centers vary on if you are in patient or can do it out patient. After getting listed is the wait and that sometimes proves to be the hardest part. You keep getting sicker and you just are clueless when you will get called.
My lung tx was 9/12/97 at Univ of North Carolina Chapel Hill.
The feeling afterward can vary in time that you start to 'FEEL GREAT". What helps most is working out pre tx and getting your muscles, bones, heart and lungs in the best shape you can. This helps you get through the surgery and also recovery.
After tx you might be shocked that you will get pounded on your back for a couple days... I know I nearly kicked the Physical therapist out of my room telling him he had the wrong room, as I had new lungs that require no pounding. Well their is fluid to get out so it all made sense once he explained.
There will be some pain, but most centers are great at pain control. The less pain you have, the more working out you will do.
The medicines will be watched closely and adjusted so that your blood levels are where they should be. There sometimes are some "bumps" post tx and we get use to that and the doctors get them smoothed out.
Having fun, living out your dream adventures are all part of the post tx life.
I wrote a book "Taking Flight- Inspirational Stories of Lung Transplantation" which 265 people submitted their stories of success. If you want more details, just email me.
As far as what I do for exercise.... I am now walking 2 miles a day and moving up fast to 3 miles. I have run in the past, and in fact a the 2000 Transplant Games I ran the 1/4 mile. I have cut back on the running as I think I am getting bad knees from it. I also played volleyball in the 2000 and 2002 games. This coming year at the games I will be speed walking, badmiton, volleyball, and maybe biking.
There is so much to do with great new lungs. I wish it would snow more ( I live in New York) so I could shovel... I adore shoveling snow and raking leaves.
Let me know if I can be of help. Stop at my web site for lots of resources and support\
<a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart
">http://groups.msn.com/TransplantSupportLungHeartLungHeart
</a>
Joanne Schum
luckylungsforjo@aol.com
Tx 9/12/97 due to CF
Hi Gangstagurl,
Good luck with your lung transplant evaluation. It is not easy testing and the centers vary on if you are in patient or can do it out patient. After getting listed is the wait and that sometimes proves to be the hardest part. You keep getting sicker and you just are clueless when you will get called.
My lung tx was 9/12/97 at Univ of North Carolina Chapel Hill.
The feeling afterward can vary in time that you start to 'FEEL GREAT". What helps most is working out pre tx and getting your muscles, bones, heart and lungs in the best shape you can. This helps you get through the surgery and also recovery.
After tx you might be shocked that you will get pounded on your back for a couple days... I know I nearly kicked the Physical therapist out of my room telling him he had the wrong room, as I had new lungs that require no pounding. Well their is fluid to get out so it all made sense once he explained.
There will be some pain, but most centers are great at pain control. The less pain you have, the more working out you will do.
The medicines will be watched closely and adjusted so that your blood levels are where they should be. There sometimes are some "bumps" post tx and we get use to that and the doctors get them smoothed out.
Having fun, living out your dream adventures are all part of the post tx life.
I wrote a book "Taking Flight- Inspirational Stories of Lung Transplantation" which 265 people submitted their stories of success. If you want more details, just email me.
As far as what I do for exercise.... I am now walking 2 miles a day and moving up fast to 3 miles. I have run in the past, and in fact a the 2000 Transplant Games I ran the 1/4 mile. I have cut back on the running as I think I am getting bad knees from it. I also played volleyball in the 2000 and 2002 games. This coming year at the games I will be speed walking, badmiton, volleyball, and maybe biking.
There is so much to do with great new lungs. I wish it would snow more ( I live in New York) so I could shovel... I adore shoveling snow and raking leaves.
Let me know if I can be of help. Stop at my web site for lots of resources and support\
<a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart
">http://groups.msn.com/TransplantSupportLungHeartLungHeart
</a>
Joanne Schum
luckylungsforjo@aol.com
Tx 9/12/97 due to CF
Good luck with your lung transplant evaluation. It is not easy testing and the centers vary on if you are in patient or can do it out patient. After getting listed is the wait and that sometimes proves to be the hardest part. You keep getting sicker and you just are clueless when you will get called.
My lung tx was 9/12/97 at Univ of North Carolina Chapel Hill.
The feeling afterward can vary in time that you start to 'FEEL GREAT". What helps most is working out pre tx and getting your muscles, bones, heart and lungs in the best shape you can. This helps you get through the surgery and also recovery.
After tx you might be shocked that you will get pounded on your back for a couple days... I know I nearly kicked the Physical therapist out of my room telling him he had the wrong room, as I had new lungs that require no pounding. Well their is fluid to get out so it all made sense once he explained.
There will be some pain, but most centers are great at pain control. The less pain you have, the more working out you will do.
The medicines will be watched closely and adjusted so that your blood levels are where they should be. There sometimes are some "bumps" post tx and we get use to that and the doctors get them smoothed out.
Having fun, living out your dream adventures are all part of the post tx life.
I wrote a book "Taking Flight- Inspirational Stories of Lung Transplantation" which 265 people submitted their stories of success. If you want more details, just email me.
As far as what I do for exercise.... I am now walking 2 miles a day and moving up fast to 3 miles. I have run in the past, and in fact a the 2000 Transplant Games I ran the 1/4 mile. I have cut back on the running as I think I am getting bad knees from it. I also played volleyball in the 2000 and 2002 games. This coming year at the games I will be speed walking, badmiton, volleyball, and maybe biking.
There is so much to do with great new lungs. I wish it would snow more ( I live in New York) so I could shovel... I adore shoveling snow and raking leaves.
Let me know if I can be of help. Stop at my web site for lots of resources and support\
<a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart
">http://groups.msn.com/TransplantSupportLungHeartLungHeart
</a>
Joanne Schum
luckylungsforjo@aol.com
Tx 9/12/97 due to CF
Thank you so much reading your story made me relize that life is worth living.
Did you ever feel like you just want to die because it was so hard to take all the meds and deal with being in the hosptial so much????
I am so worried about my health because I have been in the hosptial about 12 times this year.
I am writing to you from the nurse's computer.
I am not active at all I cant breath just waking .
I am getting a G-tube soon.
Thank you so much.
Did you ever feel like you just want to die because it was so hard to take all the meds and deal with being in the hosptial so much????
I am so worried about my health because I have been in the hosptial about 12 times this year.
I am writing to you from the nurse's computer.
I am not active at all I cant breath just waking .
I am getting a G-tube soon.
Thank you so much.
I was supposed to have a transplant a few years back but after going for the evalutaion I have decided not to go ahead with it. It is not because I want to live or anything like that but I have known a lot of kids who went in for transplant and did great afterward and within a year they all died plus I am not good with taking all my medications on time. With all the medications they said I would have to take afterward I knew I would just end up messing them up. One of my best friends got a transplant and just hours after he woke up I asked him if it was worth it and he told me that to be able to take that deep breath it was way worth it and he would do it all again. I think that you have to go with your gut feeling when it comes to matters like this you can listen to others stoires but in the end you have to decided if it is right for you.