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Old 12-07-2009, 08:01 AM   #1
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neulung HB User
Lung Transplant Patient

I just signed in today to this message board. I am post lungtransplant since 4/4/04, have recently moved away from my original tx clinic and am not happy with my new tx clinic. Need to know if there are any lung tx patients out there? Thanks

 
Old 12-19-2009, 08:44 PM   #2
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Re: Lung Transplant Patient

I have been going to uab to get on the the transplant list. But was told i was probably two to three years to early. So i am confused....i have heard alot of good things about tulane also. If you have time could you answer some questions on why i was told this. Lung function is 33 percent. I am on o2 at 2l 24/7. I still do everything, just in first and second gear only.i am careful about what i eat and excercise 4 days a week. Quitt smoking two years ago....not soon enough.....

 
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Old 12-19-2009, 08:47 PM   #3
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Re: Lung Transplant Patient

Quote:
Originally Posted by mariadolphins View Post
I have been going to uab to get on the the transplant list. But was told i was probably two to three years to early. So i am confused....i have heard alot of good things about tulane also. If you have time could you answer some questions on why i was told this. Lung function is 33 percent. I am on o2 at 2l 24/7. I still do everything, just in first and second gear only.i am careful about what i eat and excercise 4 days a week. Quitt smoking two years ago....not soon enough.....

 
Old 12-30-2009, 10:17 AM   #4
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neulung HB User
Re: Lung Transplant Patient

I really cannot tell you, are you a copd patient? I was, and had to try with all my might to go to exercise classes with o2 just to keep myself strong and also keep my weight down. Tell me more about yourself....

 
Old 01-03-2010, 08:24 PM   #5
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Re: Lung Transplant Patient

Yes I am a COPD/Emphysema....i am on advair and spriva and prednisone 10mg a day. I have gained 20 pounds in two years and my face looks like a plate with ears. not to mention my use to be a neck...I feel pretty good most of the day except when humidty above 75%..I have gone a full year now without being admitted to a hospital....YEAH.....I do all my own shopping and driving and cleaning just in slow motion....I have alot of bloating and vision is beginning to change...I go back in 4 more months for lab work and PFT and clinical visit...A lot of driving for a half a day...My pulmonary Dr. is a little confused also when I told him what UAB said...Do you have any hints or advice for me...thanks

 
Old 01-05-2010, 08:27 AM   #6
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Re: Lung Transplant Patient

Quote:
Originally Posted by mariadolphins View Post
Yes I am a COPD/Emphysema....i am on advair and spriva and prednisone 10mg a day. I have gained 20 pounds in two years and my face looks like a plate with ears. not to mention my use to be a neck...I feel pretty good most of the day except when humidty above 75%..I have gone a full year now without being admitted to a hospital....YEAH.....I do all my own shopping and driving and cleaning just in slow motion....I have alot of bloating and vision is beginning to change...I go back in 4 more months for lab work and PFT and clinical visit...A lot of driving for a half a day...My pulmonary Dr. is a little confused also when I told him what UAB said...Do you have any hints or advice for me...thanks
Sorry, it takes me awhile to answer as I am not on computer every day. What are your oxygen sats and also are you overweight? I am not trying to be impersonal here, but I had a close friend who was to have a lung transplant and they would not do this as she was overweight. And I understand about the prednisone as it really makes you want to eat. I always said I looked like a chipmunk, the bloating is really bad with prednisone, but it is an antiinflammatory drug. They want a person to either be below normal weigt allowed or just slightly above, because once youhave your transplant, youwill begin with either 80 or 100 mgs of prednisone and then work down. The amount depends on per person. Are you an ex smoker also? I was unfortunately. What about your heart, is it good? Your pulmonologist, has he or she talked or visited over phone with a transplant facility about you? They are really the ones to make a decision about you. Let me know. Friend, neulungs

 
Old 01-06-2010, 07:14 PM   #7
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Re: Lung Transplant Patient

I quitt smoking two years ago. No, I am not overweight. My heart is in excellent condition. I have already been at a transplant center and I had a week of testing. I was told I would be a perfect patient.However I was 2 to 3 years to early....Now I will have to go back to transplant center for 6 to 9 months checkups//My lung function test showed 33%..I am on o2 at 2l 24/7. I was just wondering if you ever heard of anyone being told that...

 
Old 01-07-2010, 10:02 AM   #8
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neulung HB User
Re: Lung Transplant Patient

Yes, I was first told that I would probably be a year out, and I was 11 months out as it turned out. I also had a friend who was in need for a double lung tx along with her heart, but she was very overweight, so she had to wait until she lost her weight, which she eventually did. She waited for about 2 years. I understand that it is hard on you for this wait. Just keep your chin up, keep doing what the drs are telling you to do, and keep talking to the Lord as He is the one who got me through. I was really ready to give up as I really got bad towards the end, however, the miracle came for me and it will for you also. Have you been told about what to expect after your transplant or during?
It is wonderful, I will tell you that and I hope that a member of your family will let me know when this happens. Be sure to keep me informed about anything, I will listen even if you need to just feel bad and want to complain. Neulungs

 
Old 01-08-2010, 09:40 AM   #9
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Re: Lung Transplant Patient

am not sure what you mean by being a year out. I was told it would be about 2 to 3 years before I am even put on the list. That is the part I do not understand...I have a friend who received a new heart about 3 months ago and is doing fine. It took him 2 and half years...

 
Old 12-30-2010, 02:23 PM   #10
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The senior Lady HB User
Re: Lung Transplant Patient

I'm Post Lung Transplant 05/03/2006 at Stanford Medical in CA. I've had no rejection issues so far but scar tissue developed on by bronchael tube and collasped it. My team put a stint in 10/09 but it failed and a new one was put in 11/17/10. What a difference! I feel great. I work full time and do most things I want. However I'm very careful to wear my masks if I'm in crowds or where someone is sick. Seems I'm an oddity, I'm 68 years old and feeling fine except I'm loosing the weight gain fight! I seem to beating the odds especially for my age! I don't know what to expect. Should I be planning long term or day to day? Your the first person I've had contact that is over the 5 year mark. By the way if you don't like your new team go somewhere else. I think it's imperative we have total confidence in our doctors.

Please anyone out there over 5 years let me know how you're doing. Thanks

 
Old 10-01-2011, 08:54 PM   #11
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kheady HB User
Re: Lung Transplant Patient

Quote:
Originally Posted by neulung View Post
Yes, I was first told that I would probably be a year out, and I was 11 months out as it turned out. I also had a friend who was in need for a double lung tx along with her heart, but she was very overweight, so she had to wait until she lost her weight, which she eventually did. She waited for about 2 years. I understand that it is hard on you for this wait. Just keep your chin up, keep doing what the drs are telling you to do, and keep talking to the Lord as He is the one who got me through. I was really ready to give up as I really got bad towards the end, however, the miracle came for me and it will for you also. Have you been told about what to expect after your transplant or during?
It is wonderful, I will tell you that and I hope that a member of your family will let me know when this happens. Be sure to keep me informed about anything, I will listen even if you need to just feel bad and want to complain. Neulungs
Hello, Anybody there? My doctor has suggested a lung transplant for me and I have all kinds of questions. I'm happy that you have gotten your transplant and sound so positive. The reason I even considered a lung transplant was that a friend told me of a 70 year old woman who got a lung (or lungs) transplant and is doing pretty good. So now I don't think I'm too old for a transplant. At the moment, I'm consumed with trying to get the right insurance to supplement my Medicare and to cover all the meds post transplant. Any suggestions on insurance? Any advice on general health care before and after a transplant? Thanks, kathie

 
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