15 years! You are an inspiration to us all.
Now going back to something that was said. No a transplant does not cure CF, but believe me, when your body is getting 100% Oxygen and you aren't fighting off constant infections, things just sort of fall into place.
I had my feeding tube inserted when I was 14 years old. I used that thing EVERY night, as many cans as I could squeeze in. Eventually, the feeding tube was simply there to sustain my life and maintain my weight. I was only 76 pounds at the time of transplant. When I woke up I was eating massive amounts of food (hospital food at that), when I left my appetite continued, and guess what, the weight followed as well.
I never used my feeding tube again after I had my transplant and about 3 weeks later, they pulled that sucker out! So yeah, my pancrease is still affected seeing as I have to still take enzymes and all, but I am digesting my food and my body is absorbing the calories I eat because I'm not fighting off infections. But I am currently a healthy 96.5 pounds (I'm only 4'11", my highest weight post transplant was 103).
I will say, when I get a cold, I still drop weight pretty quickly. The great thing is though, if you put your mind to it and eat, you can put it right back on. And yeah my sinuses are still affected, but I see an AMAZING sinus guy every two months, and I am crazy with the saline sprays. Helps to keep everything clear and clean!
This is my opinion: when it comes to transplant a positive attitude goes a long way. You can sit and read about everything that can go wrong, or all of the things you need to avoid...which is great and everyone going into a transplant should know that information. I think transplant is something that you really have to want. You have to want a better life, want to succeed and have an unbelievable will to live to fight through the tough times. My transplant has not come along without it's complications and I have a hard time when I talk to a friend who did not have such a great run with transplant (not a CFer). But I stay positive and forge ahead, because my life today, my ability to breathe, to work, to play, to laugh, to love has been 100 trillion times better than my best day with CF.
Just an FYI in the last two years some of my complications: acute rejection (two weeks post, handled with a high dose of steroids, hasn't been back since); airway narrowing (2 months post; bronchoscopy; ballooned open); bronchitis (4 months post transplant; my doctor believes I stressed myself out because I was moving back home from New Orleans; bronch; course of IVs); Nasal Polyps (a year post transplant; out of control!, surgery); Pneumonia (1 1/2 years post transplant developed from the Para influenza virus; significant drop in PFTS; hospital stay; two weeks IV; three week leave of absence from job); Sinus polyps again! (2 years post transplant; office procedure to pull them out); PFTs down from effects of para influenza virus (bump and taper on prednisone); just as I was getting better...I caught RSV (2 years 2 months post; drop in pfts; bronch; antibiotics); This brings me to now (2 years 4 months post)...just went back to the doctor, pfts up significantly, gained weight, cat scan shows improvement...however, there is a new "area of pneumonia" that was not on a previous cat scan...it is contained so I am on Levaquin and I have to go back in a month for repeat PFTs and Cat Scan. If all is well then wooohoo, if not then bronch me.
So that has been the last two years of my life. I don't know if that helps at all just to see what type of complications can come up. If I learned anything in the last two years it is HANDWASHING; HANDWASHING; HANDWASHING!
So for all of you out there considering transplant, on the waiting list, or just transplanted STAY POSITIVE and keep pushing!
Now going back to something that was said. No a transplant does not cure CF, but believe me, when your body is getting 100% Oxygen and you aren't fighting off constant infections, things just sort of fall into place.
I had my feeding tube inserted when I was 14 years old. I used that thing EVERY night, as many cans as I could squeeze in. Eventually, the feeding tube was simply there to sustain my life and maintain my weight. I was only 76 pounds at the time of transplant. When I woke up I was eating massive amounts of food (hospital food at that), when I left my appetite continued, and guess what, the weight followed as well.
I never used my feeding tube again after I had my transplant and about 3 weeks later, they pulled that sucker out! So yeah, my pancrease is still affected seeing as I have to still take enzymes and all, but I am digesting my food and my body is absorbing the calories I eat because I'm not fighting off infections. But I am currently a healthy 96.5 pounds (I'm only 4'11", my highest weight post transplant was 103).
I will say, when I get a cold, I still drop weight pretty quickly. The great thing is though, if you put your mind to it and eat, you can put it right back on. And yeah my sinuses are still affected, but I see an AMAZING sinus guy every two months, and I am crazy with the saline sprays. Helps to keep everything clear and clean!
This is my opinion: when it comes to transplant a positive attitude goes a long way. You can sit and read about everything that can go wrong, or all of the things you need to avoid...which is great and everyone going into a transplant should know that information. I think transplant is something that you really have to want. You have to want a better life, want to succeed and have an unbelievable will to live to fight through the tough times. My transplant has not come along without it's complications and I have a hard time when I talk to a friend who did not have such a great run with transplant (not a CFer). But I stay positive and forge ahead, because my life today, my ability to breathe, to work, to play, to laugh, to love has been 100 trillion times better than my best day with CF.
Just an FYI in the last two years some of my complications: acute rejection (two weeks post, handled with a high dose of steroids, hasn't been back since); airway narrowing (2 months post; bronchoscopy; ballooned open); bronchitis (4 months post transplant; my doctor believes I stressed myself out because I was moving back home from New Orleans; bronch; course of IVs); Nasal Polyps (a year post transplant; out of control!, surgery); Pneumonia (1 1/2 years post transplant developed from the Para influenza virus; significant drop in PFTS; hospital stay; two weeks IV; three week leave of absence from job); Sinus polyps again! (2 years post transplant; office procedure to pull them out); PFTs down from effects of para influenza virus (bump and taper on prednisone); just as I was getting better...I caught RSV (2 years 2 months post; drop in pfts; bronch; antibiotics); This brings me to now (2 years 4 months post)...just went back to the doctor, pfts up significantly, gained weight, cat scan shows improvement...however, there is a new "area of pneumonia" that was not on a previous cat scan...it is contained so I am on Levaquin and I have to go back in a month for repeat PFTs and Cat Scan. If all is well then wooohoo, if not then bronch me.
So that has been the last two years of my life. I don't know if that helps at all just to see what type of complications can come up. If I learned anything in the last two years it is HANDWASHING; HANDWASHING; HANDWASHING!
So for all of you out there considering transplant, on the waiting list, or just transplanted STAY POSITIVE and keep pushing!
