Hi, Hope everyone who celebrates had a Merry Christmas.
I have Bronchiolitis Obliterans and my FEV1 is around 24-25%. I've been like this for a few months now. I'm currently taking 1250mg of Cellcept 2x/day to try to prevent it from getting worse or preferrably improve it! But, no improvement yet after a few months on Cellcept. The Dr has mentioned the use of Rituxan, an infusion drug. Anyone been on this before?? It's generally used in cancer treatments.
Does anyone out there have Bronchiolitis Obliterans? I've searched on this site but haven't found anyone. Because my lung volumes are so low, a double lung transplant could be in my future. I'm using Dr. Sally Wenzel at UPMC-Pittsburgh.
Please if there is anyone out there similar to me, let me know. I'm 38 yrs old and have always been fairly healthy, then this took over my life about a year ago and is downright terrifying. So many of you have been through so much; you would likely have great advice for me!! Thank you and best wishes that the new year brings us all good health!!
Welcome! What I am confused about is this- did you already have a double lung transplant and you are now experiencing BOS? Or did you just develop BOS and might need a double lung transplant?
Whatever the case maybe, if you are able to get a double lung transplant ask your transplant doctor.
I had BOS with my first transplant and it was not any fun. The only thing that helped me was relaxing exercises and energy medicine. If you want my help with this please ask.
Have you had your vitamin D levels checked? There was a study in Loyola Medical Center- read this:
Write back when you can.
Sorry for the confusion! No, I have never had a lung transplant. I just suddenly developed Bronchiolitis Obliterans. After 7 months of lots of tests, they did a biopsy and identified the diagnosis. After more testing, they believe the cause is a rare unidentified auto-immune disease. I have been to Drs here in NY, went to Johns Hopkins and now I'm dealing w/Pittsburgh. My Dr. there seems to have the most, yet still limited, experience with my disease. It's extremely frustrating. Because my lung volumes are so low, if they don't stop the disease from progressing, a double lung transplant is likely in my future. I'm terrified. And like you said, I could end up w/the same disease after the transplant!
Why did you have a lung transplant? You had 2? How long has it been? Please share your story! How did you handle the everyday life stuff? I find some days are so difficult to get through, mentally and physically. Going out at night is tough b/c that is usually when I am most symptomatic. Any advice is much appreciated!!! Thank you!!
Here is my story
You can also look at this forum on transplantbuddies
I will write back soon
Please pace yourself and eat healthy but most of all keep moving. Staying in good shape is most important.
Avoid chemicals in your home.
Thank you! I try to eat healthy and stay as active as I can. Sometimes that just means standing up all day vs. sitting around. I'm not overweight so that helps. My Dr. just increased my Prednisone to 30mg b/c I was so symptomatic so now my energy level is pretty high.
I'm hoping you may be able to help. I was reading through transplantbuddies.org and found a woman, Karen Range, who was diagnosed w/BO in 96. But I can't figure out how to reach out to her and find out how she is doing. Do you know of her and I can I do his?
Glad to hear you are feeling better. Ask your doctor about calcium, magnesium and vitamin D especially while you are taking prednisone.
Karen is a great lady and when she is back online tomorrow, I will forward her your post.
I am sure she will be answering you shortly
What you could do that would also help others is to introduce yourself on transplantbuddies heart and lung forum and I will tell her to read your post.
This way, others in your situation might join and reply and contribute to your questions.
Stay with us and you will see that you will learn alot that will help to soothe your soul.
HAPPY NEW YEAR!
Thanks Rita! I appreciate the support. I will definitely post on the other site too. I'm still learning how to navigate this site..I didn't realize it was separate from the .org one. Thanks again. Happy New Year!