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| November 8th 2001 (3rd transplant checkup) I had my 3rd transplant checkup and it went very well. I currently weight 105lbs. I had spoke to my transplant doctor about having trouble sleeping at night and having to use 2 fans. This has been occuring on and off for the past 4-5 months, but it's gotten worse in the past 2 weeks. I use a fan on the right side of the bed and another on the left side. I would turn over in the middle of the night and there'd be no fain. I then woke up needing fresh air. |
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| July 30th 2002 (5th transplant checkup) A lot has happend since my last checkup back in February 2002. This spring wasn't the best for me as I was on home IV's for 2 weeks in April due to an infection. After I was off my home IV's I still wasn't any better. I was having signs of diabetes and sure enough come May 2002 I was hospitalized due to my infection coming back. I was drinking tons of water and always felt tired and wanting to sleep all the time. My infection came back due to my diabetes not letting the antibiotics do their thing. Since May my sugar has been controlled and I have a lot more energy now then what I did back in April & May. I weight 108lbs now. I'm up 1lb from my last visit, which is good. My transplant doctor said that I have a strange infection in my lungs that was cultured in my sputum. It's called Alcaligenes which is basically an infection in the lungs. Of course I always have infection in my lungs because that's what CF is. There's not really anything they can be done since it's just an infection and I'm not sick or anything like that. I didn't do a 6 minute walk or any breathing tests this visit. Since the last time (Feb 2002) I had my last appointment my health hasn't changed . Sometimes when I'm just sitting around or doing activity (walking) it feels like I'm breathing through a tube that's half plugged. Since May I've been coughing more sputum up and coughing more frequently. In a way that's good because I cough up all that junk instead of it resting in my lungs. My FEV1% currently is still 42%. |
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| 1st YEAR ON TRANSPLANT LIST February 5th 2002 (4th transplant checkup) I had my 4th transplant checkup and everything went good. I currently weight 107 and have gained 2lbs since my last visit 3 months ago. A year ago my FEV1% was 38% and now it's 45%. I'm very happy because I've worked my butt off for the past year staying fit and staying out of the hospital. I did my 6 minute walk again, but... this time I got 19 laps! Last time I did the 6 minute walk was back in August 2001 and I did 20 laps. I'm still very happy that I'm staying close to 20 laps which is where I'd like to be. Since my last transplant checkup I've gotten a Port placed in my right arm for when I'm in the hospital or on home IV's. I got this so I would't have to be poked all the time while I'm sick. This way things will be a lot easier. I'm still currently on Sporanox. I was put on it my last visit because of a medium amount of Aspergillus was detected in my sputum. I'm on 400mg of the liquid form of Sporanox. I hope this will take care of the Aspergillus and make it go away. My transplant doctor told me that I didn't have to come back for a visit until every 6 months. He said if he needed any test results he'd get them from my CF doctor. My next transplant appointment will be in August 2002. My FEV1% currently is 45. As of last July 8th 2002 I've been on the transplant list for 1 year and 5 months. (515 days) |
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| Any generation X kid like myself has played Super Mario Bros. one time or another. I remember when I first got my Nintendo back in August 1985. Super Mario Bros. was a game that came for "free" with my Nintendo. I us to stay up so late at night trying to beat it and in my opinion it's the best game on earth. At the time people didn't care about "graphics" like they do now. Nintendo was the next generation in game systems. Mario is a character that most people can relate to. He's an everage person. Him and his brother are plumbers. They're both trying to save a princess (Princess Peach) from Bowser who is half turtle and half dragon. Nintendo and Super Mario Bros. was a huge hit and they went on to make Super Mario Bros. 2 and 3. This will always be the best game on earth and it's never about the graphics it's about the adventure and Super Mario Bros. was just that. (CLICK ABOVE OR HERE TO LOOK AT MARIO HISTORY) |
| 2nd Year On Transplant List!! (January 15th 2003) 6th Transplant Checkup It seems like the years and even months have passed so quickly since I was listed on the double lung transplant list at Henryford Hospital. This appointment really wasn't good. My transplant doctor asked me if I felt that I've gotten worse in the 2 years since I was listed. I told him. "Yeah I've gotten worse mostly when it comes to breathing. When I exhale out deeply it feels like I'm breathing through a tube that's half closed off because mucus is stuck or plugged up in my bronchial tubes. When I exhale the air coming out is blocked or squeezes past the mucus making it harder for me to exhale out." He explained to me that's exactly what CF does to you. It was a relief that he told me that because I thought I was going nuts. He then explained to me that he felt it was getting sooner in need for a transplant. This kind of shocked me because I always thought you, at least had to be on oxygen or sick all the time. He then told me we'll see how things go from now until my next appointment in July. I did my 6 minute walk which last (1 year ago) was 19 laps and this time I did 18 laps which I'm happy with. My FEV1% is 44% which is up 2% from 5 months ago. My weight is 110lbs which is up 2 pounds from my last appointment from 5 months ago. The working out sure has been paying off. |
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| Page 4 of 6 |
| Note: Pictures from Marioworld |
| Please turn your volume up if you cannot hear the music. |