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Lung(s) Transplants

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.

Website: http://transplantfriends.com
Location: transplantfriends.com
Members: 170
Latest Activity: 4 hours ago

Links

Heart and Lung Forum on Transplant Friends.com

Invite Your Friends to Join us- click here

"Icky Sticky Stuff" By Rise' 1993

Children's story-about Pul, Mo, Zyme help Dr. Shak  test out his new potion for children with Cystic Fibrosis. 

The lung image in our group was designed by Scott

Discussion Forum

Lung Transpant Evaluation

Started by miocean. Last reply by Judy L. on Tuesday. 6 Replies

5 Year Survival

Started by Jay Lackritz. Last reply by Armand Mar 30. 73 Replies

Lung Transplant Friends

Started by james. Last reply by pas Mar 27. 8 Replies

"Other" post transplant "No's No's"

Started by Boodawg. Last reply by Barb Moye Nov 1, 2013. 15 Replies

Tattoo's

Started by Kelly. Last reply by Julie Oct 17, 2013. 24 Replies

Maximum travel distance

Started by animal1x. Last reply by animal1x Aug 12, 2013. 4 Replies

Diabetes Makes Lung Transplant Riskier

Started by Jay Lackritz Jun 20, 2013. 0 Replies

Opera singer Charity....

Started by Hostess Risé Jun 1, 2013. 0 Replies

New to group

Started by Adam. Last reply by pas May 30, 2013. 7 Replies

lung transplant questions

Started by jon. Last reply by jon May 29, 2013. 8 Replies

Introductions

Started by Hostess Risé. Last reply by Cindy Apr 1, 2013. 25 Replies

Lung Tx Rejection and Testosterone

Started by John43. Last reply by Rachel Apr 1, 2013. 5 Replies

Lung Transplant on TV

Started by Jay Lackritz. Last reply by debfay Jan 26, 2013. 5 Replies

waiting

Started by Steven. Last reply by nancy Cowart Jan 25, 2013. 13 Replies

Transplant Survey -- Please take a few minutes

Started by Barbara Branaman. Last reply by Bobbiejo Winfrey Dec 12, 2012. 2 Replies

Comment Wall

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Comment by Don Reed on February 2, 2014 at 9:34pm
Hi Rachel,
Thanks for asking. My transplant went very well, and I had only a couple/three bumps, I had Mercer, Canada, CMV, Microbacteria, and my transplant team is very good and got everything under control very fast.
I did return to the same job after my FMLA, I'm a Operation's Manager for a commercial refrigeration company. I was extremely exhausted the first couple of weeks from the mental part of the job, not to mention getting my arms back around everything/all the changes that corporate rolled out while I was off.
Comment by Rachel on February 2, 2014 at 9:05pm

Congratulations Don Reed

Amazing that you returned to work just after six months.  How did you feel right after you returned to work.  Were you able to return to your old job? Wish you all the best.

Comment by Don Reed on February 2, 2014 at 1:11pm
Hi, I've been following out on Facebook for a while now. I was in the final stages of IPF, when I received my bilateral lung transplant on March 7 2013, it been a short 10 months. I've had a couple of bumps, but all in all things went really well. I've returned to work at 6 months post. I thank The Lord and my donor and his family every day for saving my life and giving me a second chance!
Comment by Peggy Sue Collier on January 13, 2014 at 12:39pm
Thanks ..I thought I would never find other people can that has the chronic lung allograph dyfuction. The doctors tell me there is nothing they can do.. I have just past my 14yr mark for my heart and lungs.
Comment by Jay Lackritz on August 29, 2013 at 4:16pm

Fred,

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.

Comment by Mackju on August 29, 2013 at 2:36pm

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.

Chronic rejection is generally considered irreversible and poorly amenable to treatment—only retransplant generally indicated if feasible—though inhaledcyclosporine is being investigated to delay or prevent chronic rejection of lung transplants. Acute rejection is treated with one or multiple of a few strategies. (see wikipedia) There is not medical treatment for BOS. 

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.

Friend,  Fred 

 

Comment by Jay Lackritz on August 29, 2013 at 1:23pm

Mackju,

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."

Dukehealth.org

http://tinyurl.com/p328ekx

I have never heard that as you say "normally can be treated and even cured."

Can you say what treatments will cure chronic rejection?

Comment by Mackju on August 29, 2013 at 12:55pm

Steve:

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  

Comment by Mackju on August 29, 2013 at 12:13pm

Miranda:

The letter to the donor's family ended with you are so very special.  sorry about the mistake.. 

Comment by Mackju on August 29, 2013 at 12:08pm

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.      

Dear Family

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

 

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