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Old 05-11-2007, 04:40 PM   #1
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sapp82grl HB User
Need help...don't want to carry around an oxygen tank

Hi, this is my first time on the message board. I have a close friend with CF. He is 26 and has had to be in the hospital 3 times within the past year to receive antibiotics through a PICC line. This last time his doctor put him on oxygen because his o2 test was 84/85. From the way his doctor makes it sound he may always have to be on oxygen from now on. He hasn't always been real good about taking all the medications he should and using his nebulizer every day but now is very determined to make things better. My question is, is there any hope to get his oxygen levels up without having to carry around a tank for the rest of his life? He definitely needs to gain weight and is going to try and eat around 4000 calories a day. Is there anything else that can be done? Does anyone have any stories of someone who has been at this point and made some kind of recovery?

 
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Old 05-26-2007, 12:59 PM   #2
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mmarie76 HB User
Re: Need help...don't want to carry around an oxygen tank

Hi,
This is my first time posting and I'm new to the site. I wanted to try to help you with your question. For your friend to gain weight, I'd recommend getting a feeding tube or G-button. I'm 31 years old and when I was about 15 or 16 I weighed 75 lbs. My doctors finally convinced me to get a G-button and I gained 20 lbs in a short amount of time. It's really hard to eat that many calories, I found that, because I had so much trouble with my breathing, I'd wear myself out and wouldn't be very hungry.

By the way, I too have Cystic Fibrosis. I was on oxygen 24/7 and thought I'd be for the rest of my life, too. I even had to wear the oxygen when I took a shower, I was that bad. That's when I realized that I wasn't getting better and probably never would. I wanted to stay around for a much longer time--much longer than the time it appeared I had left. I was 17 when I was evaluated for a double lung transplant. The doctors said I was a good candidate and so I moved from Louisiana to St. Louis, MO (St. Louis Children's Hospital) to wait for my new lungs. I got them in December 1993. My lung function was normal and still is after 13 and a half years. It was the best decision that I ever made. I am still thankful to the wonderful people that donated their loved one's lungs so that I could still be here today.

Your friend may want to consider a transplant. I know it's a huge decision to make. It's a great one to think about. I can't say that everyone has the same outcome as I have with transplantation, but it helps to do some research. I hope this helps instead of scares you. I definitely would tell your friend to look into the feeding tube (G-button), though. Once he puts on weight and has better nutrition, he will feel better I think.

Good luck in whatever your friend decides.

 
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Old 01-21-2008, 04:33 PM   #3
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sapp82grl HB User
Re: Need help...don't want to carry around an oxygen tank

Hello, thank you for your response! I know it's been a long time since I last posted. My friend is considering going in for a lung transplant evaluation some time this year. Can anyone tell me what kinds of things he could potentially be denied for? Anything in particular he should be prepared for? Any information and/or stories would be helpful.... thanks!!

 
Old 02-04-2008, 05:16 AM   #4
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Hoffnung67 HB User
Re: Need help...don't want to carry around an oxygen tank

Hey there

I read your post about your friend. I have two boys with Cf and my oldest 21 has recently had two pneumothorax within a month. As long as he's had CF they have always told us that he may not be able to get a lung transplant and made it seem impossible to get one. He's being seen here in MD and after 20 years we have a new doctor that cares for him now and she got the ball rolling to get him Evaluated for a transplant. Since he was a in patient for almost a month they did the bulk of the Eval there already. Some issues they looked at to see if he's always done the right thing on taking his meds, coming to all appointments, never had any issues mentally. Well let me tell you he's failed on all them but since they don't look at past mistakes anymore, more so how severely sick the patient is, he now has a good chance.
How is your friend? How old is he? My son has done so well for so long. and since Dec 28th he couldn’t even walk to his bed without being on Oxygen.
If you wanna share anything or going thru this right now please reply back. Please let your friend know that my hopes and prayers are with you. Tell him to stay strong and positive. It may be a long haul but it's so worth it.

 
Old 07-10-2008, 12:00 AM   #5
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sapp82grl HB User
Re: Need help...don't want to carry around an oxygen tank

To Hoffnung67:

My friend is 27 and he is finally going for the evaluation next Tuesday. He is very nervous, but also excited about the possibility of leading a normal life again. Like your son, he had done very well up until about 4-5 years ago when his health really started to decline. He is now on oxygen 24/7.

How did the evaluation for your son turn out? Did they accept him? I wish you all the best. Keep me posted.

 
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