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For those who have received one or both lungs. Site is open to anyone who have received a lung(s) along with another organ. Caregivers are also invited. We ask that you share your experiences and be as positive as possible in your comments.
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Children's story-about Pul, Mo, Zyme help Dr. Shak test out his new potion for children with Cystic Fibrosis.
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Thanks for replying so quickly.
Yeah.... the medical term chronic, normally means very long term, and usually means that there is no cure (but not always).
I used to have Chronic Obstructive Pulmonary Disease, which is also long term, has no known cure (other than lung transplant), and is usually progressive, but nowadays, with the newer drugs and treatments, can often be slowed or stopped.
My FEV1 rapidly declined to about 50% in my 2nd year, and I was scheduled for Photopheresis, but when I checked into the hospital, I had just come down with shingles, so they just sent me home to take care of the shingles. That was a very lucky case of shingles, (first time I've ever been happy to get shingles), because while I recovered from that, my FEV1 stopped dropping and stabilized at 53%, so I never had any treatments. My 6th annual tests that I just had this week, showed my FEV1 is now at 62% (after slowly climbing to 57% over the last 4 years or so).
I had acute rejection twice in my first year, but the 3 days of 1,000mg Pred shots took care of that likety split.
So, no BOS yet, and no apparent rejection, knock wood.
All this talk about CR seems kind of nebulous to me, but I wish you the best with the BOS, and my guess is that you'll come through it okay.
And yeah.... I think that many of us here are brothers from another mother.
Jay, wanted to get back with you ASAP. You are right I am wrong. However, some folks are able to overcome CR and go on to live many years. I have BOS and that's what you may have, it doesn't really matter they both suck.
Photopheresis Treatment may have helped me. My FEV1, like yours took a nose dive. Yours much worse than mine. I went from 90 to 50 in about 6 months. I have held at 50% for about 6 months.
Jay lets keep in touch, I think we went to different schools together.
According to Duke:
"Chronic rejection: A condition characterized by scar tissue in the small airways of the lungs. Chronic rejection is the most important factor limiting long-term survival after lung transplant. There are no consistently effective treatments for this condition, which will affect approximately 50 percent of lung transplant patients within five years of transplant."
I have never heard that as you say "normally can be treated and even cured."
Can you say what treatments will cure chronic rejection?
Photopheresis Treatment: I have gone through this and compared to what you have Already experienced it is not so bad. Had some intern rookie putting the capiter in my neck, that was the worse part. I had four treatments and they were almost painless. My FEV1 has been stable at 50% for the last few months, I just hope it stays that was for a while. Good Luck My Friend, Fred
Carlie, I have BOS which is not currently treatable. Chronic rejection is not a good thing but normally can be treated and even cured.
About 6 months ago I was diagnosed with Bronchiolitis Obliterans Syndrom, (BOS is a lung disease characterized by fixed airway obstruction. Inflammationand scarring occur in the airways of the lung.
The clinical course of BOS can vary from insidious onset and gradual decline in pulmonary function over months to years to abrupt onset with severe decline in pulmonary function over a few weeks.
BOS is a major problem in lung transplantation, with a high incidence, rapid progression, and poor survival. It affects all modes of lung transplantation, regardless of sex, age, or underlying diagnosis. Unlike acute rejection, BOS doesn’t respond to currently available medical treatment.
The symptoms can start gradually, or severe symptoms can occur suddenly.
THE VERY GOOD NEWS: Even though I am experiencing the symptoms of BOS, my oxygen saturation level has remained steady (86-94)for the last 6 months. That means the new lung is giving me all it’s got and I am confident that it will not fail me. When in Denver for my check ups I meet transplant patients all the time that has live with BOS for years. I get around good, still play golf and enjoy life. No time for a pity party. Just wanted to keep you in the loop.
The letter to the donor's family ended with you are so very special. sorry about the mistake..
Miranda: My stransplant was November 18,2011 (single). My donar was a 16 year old girl. Below is a copy of the letter I gave to my doctor, so he could get it to the clearing house and on to the parents of this wonderful person. I think about her a lot and don't even know who she is. As far as feeling guilty I don't, at times I feel sad because she is gone, but she did what she so much wanted to do, save lives. My first year after transplant was great, I could breath. However, things have gone south, now I have rejection, BOS and more. Life for me right now is tolerable, certainly in no way normal. When things were going good, I did not understand that I must enjoy life for now and not count on being around forever. With a double transpalnt you have 50% better chance of living 10 than a single.
I am certain this letter may be as difficult to read as it is to write. I still can’t believe I am here to write it, it is both painful and joyous. The reason I am writing is to thank you.
I was on 12 litters of oxygen; my lungs were not capable of providing the oxygen to my organs that was essential to sustain life. My wife had to feed me mashed potatoes, because I was too weak to feed my self. I had given my only son my living will and we had discussed what he should do after I was gone. I had a two week old grand son that I new that I would never see. It was over for me.
Just to say "Thank you" seems so lacking. There are no words in any language that could ever truly show how much you and your daughter have given to me and my family.
After graduating from High School I enlisted in the United States Air Force. My initial overseas assignment was in South East Asia. I subsequently served two additional tours in Southeast Asia and a total of 17 years in various countries throughout Asia.
My wife is Kim we have one son, Robert; a daughter-in-law, Panna; and three beautiful young granddaughters and one Grandson, Lily, Brooklyn, Kiona and Greyson. I love family, Coaching kids, golf, and taking my dogs, Boston and Ben G, for walks in the park.
You and your daughter have given me the gift of life, the most precious gift of all. I could never express in words what this truly means but I will try, I must try, because you should know that this life that was saved was not saved in vain but is a life of promise. The promise to you is that I will dedicate the rest of my life to helping others and I will never waste one moment of it.
I love you and your daughter without knowing you and every day for the rest of my life I will think of you. You are so very special. The lungs that you have are special, and the person who had those lungs wanted you to have those lungs. Live hard, enjoy life, self and family
Fred, Kim, Robert, Panna, Lily, Brooklyn, Kiona and Greyson
A very positive uplifting story about a double lung transplant patient
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