Hi. I just completed the evaluation process and saw that some others are at the same hospital in Boston. So happy/pleasantly surprised. Don't know anyone else w/this illness except my older brother who is quite healthy. Brigham referred me to two post-transplant patients to talk to and they've been a great resource and support system.
I am 32, married w/a 7 month-old baby. Had symptom-free childhood. Symptoms appeared/worsened when I was in my mid-to-late 20's. Life has certainly changed now. Get tired a lot, have coughing fits that are so violent my body shakes, get a fever sometimes from the infection and throw up a lot. Weighed 118 pounds in grad school (1998) and now weight 94. Not sure how it happened, but over time I just lost interest in food. Brigham asked me to get a feeding tube so I just did. Cut off weight to get transplant there is 93 pounds otherwise not strong enough to go through it.
Transplant evaluation was long and tedious, but not too awful. Involves a lot of tests/procedures, but they try to fit a bunch in one day so it's about 3 or 4 days total and they spread it out over a month (or at least they did for me). One of the most important things they look at (besides weight) is strength/stamina. They have you do a 6 minute walk (basically walking laps) and this must be updated every 6 months until you get your transplant. Very important to stay in shape and even lift weights. Was told the patients who do the best w/transplant are the active ones. I know this can be hard when you feel like crap and are short of breath, but I think any kind of activity is better than nothing. So, I'm trying...
Think it'll be awhile b/f I get my new lungs. Not one of the sickest (which seems funny compared to a normal person!). Read how Mike's FEV1 is 24% (guy listed at Brigham). Must be so hard. My FEV1 was 29% when I was pregnant and I remember lying on the couch gasping for air. I felt like I was in hell. Not here to sugar coat anything as I don't walk in Mike's shoes. I just hope he can hang in there as I here the wait is so well worth it. I imagine the day I wake up with normal lungs and can just breathe without coughing. I want to experience that at some point in my life. It's got to be worth the wait. It just has to be!
Hang in there.
Vicki
I am 32, married w/a 7 month-old baby. Had symptom-free childhood. Symptoms appeared/worsened when I was in my mid-to-late 20's. Life has certainly changed now. Get tired a lot, have coughing fits that are so violent my body shakes, get a fever sometimes from the infection and throw up a lot. Weighed 118 pounds in grad school (1998) and now weight 94. Not sure how it happened, but over time I just lost interest in food. Brigham asked me to get a feeding tube so I just did. Cut off weight to get transplant there is 93 pounds otherwise not strong enough to go through it.
Transplant evaluation was long and tedious, but not too awful. Involves a lot of tests/procedures, but they try to fit a bunch in one day so it's about 3 or 4 days total and they spread it out over a month (or at least they did for me). One of the most important things they look at (besides weight) is strength/stamina. They have you do a 6 minute walk (basically walking laps) and this must be updated every 6 months until you get your transplant. Very important to stay in shape and even lift weights. Was told the patients who do the best w/transplant are the active ones. I know this can be hard when you feel like crap and are short of breath, but I think any kind of activity is better than nothing. So, I'm trying...
Think it'll be awhile b/f I get my new lungs. Not one of the sickest (which seems funny compared to a normal person!). Read how Mike's FEV1 is 24% (guy listed at Brigham). Must be so hard. My FEV1 was 29% when I was pregnant and I remember lying on the couch gasping for air. I felt like I was in hell. Not here to sugar coat anything as I don't walk in Mike's shoes. I just hope he can hang in there as I here the wait is so well worth it. I imagine the day I wake up with normal lungs and can just breathe without coughing. I want to experience that at some point in my life. It's got to be worth the wait. It just has to be!
Hang in there.
Vicki