Cystic Fibrosis-Transplant

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Cystic Fibrosis-Transplant

CF Buddies who have had a double lung transplant help those who are waiting for their gift to Inspire and share our stories.

Website: http://transplantbuddies.org
Members: 27
Latest Activity: Oct 22, 2013

Discussion Forum

HAS ANYONE HAD A SECOND DOUBLE LUNG TRANSPLANT?

Started by Scott. Last reply by Hostess Risé Oct 22, 2013. 4 Replies

We are dealing with chronic rejection, doing Photopherisis weekly now and hopeful this will help. Been out over 14 years. CF. 53yrs old.  Looking into second transplant but wondering if any of you…Continue

Fundraising for Josie Nordman

Started by Hostess Risé Jan 20, 2013. 0 Replies

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Children's Organ Transplant Association

Started by Hostess Risé Jan 4, 2013. 0 Replies

Transplant                     FamiliesJANUARY 2013               FAMILY…Continue

Tags: association, transplant, organ, childrens, cota

Experimental treatment using stem Cells

Started by Hostess Risé Dec 13, 2012. 0 Replies

For those of you curious readers out there,  I suggest you check out my friends bloghttp://www.angelodistefano.com/He has Cystic Fibrosis and I have…Continue

Tags: stem, cells, Fibrosis, cystic, distefano

Comment Wall

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Comment by Pat Emery on November 8, 2011 at 11:29pm

Kool! This is just what I've been looking for on this forum! It's good to know there are others out there in the same situation. My name is Pat, I live in Central Arizona. I had a double-lung trans on June 16, 2005. My trans didn't go as well as we planned but its OK- I'm still alive & doing pretty good for the most part. I've had more than my share of 'bumps in the road' but, that which doesn't kill ya is only supposed to make you stronger. Looking forward to hearing from all of you in similar circumstances. Take care, 'Pat'.

Comment by Hostess Risé on April 11, 2011 at 5:02pm

Hi Jason

All websites are difficult to manage at first. Please stick around and give it time.  Just click in the above comment box.

 

no worries, I did not receive any message from you just an introduction.

I am so happy you joined us:)  Congratulations on receiving two new lungs.

Comment by Jason on March 31, 2011 at 8:03am
I am finding this difficult to use, I think I sent a message to everyone instead of a post, apologies
Comment by Patti on June 1, 2010 at 11:11pm
Hey everyone! I know most of you, but for those I don't know, I'm 28 (will be 29 in two days) and have CF. I had my life saving double lung AND liver transplant on January 31, 2007 at the Cleveland Clinic. I'm so blessed to be here with my husband and son and I, like Mike, have had the amazing opportunity to meet many other people with CF. :)
Comment by Michael Adams on February 16, 2010 at 3:21pm
I totally loved reading this thread!! Without Cf i wouldn't have had the thrill of meeting so many wonderful people!
There have been a few people who have made an amazing impact on my life during my 46 years of being here.
One of those people was a 15 year old CF'r. Her name was Kira and to her my wife and I were Mommy and Daddy #2. This little girl showed me the true meaning of courage! She never received her transplant and lost her tough battle to this disease CF.
One of the hardest things i have ever done in my life was stand over this " Concrete Angel " as the Ventilator which pumped life into her tiny body was turned off.
When i was having a bad day i could always expect to get a "Suck it up princess" from Kira.
All of you with Cf are hero's in my book!!
Comment by Sylvia Tencza on February 16, 2010 at 2:24pm
I agree-- Rise, You are a gift! And Genevieve, Steve is right-- about everything! It's awesome (for lack of a better word) to breather without the problems CF has given our lungs! You will see...
I had my fourth annual evaluation last week (yes, it was a few weeks late). The doctor commented that I was doing "much better than expected", and she was pleased with all test results. (Just had to tell someone!)
Keep up the faith, stay healthy!
Comment by Steve Ferkau on February 11, 2010 at 2:39pm
Hey Gen!!! Welcome! We're so glad you're here... And thanks for reading my post...

Yup -- "false starts" or "false alarms" are a little irking -- but back then we were told that every time we got called, there was a 50% chance we were going home -- and those odds are mutually exclusive, so being sent home once doesn't mean your chances are better next time... But you get through it... Same with dealing with low lung function -- my FEV1 when I was listed (almost 3 years before my transplant) was between 0.4 and 0.5 -- my FEV1 now is around 4.0!!! Breathing with "real" lungs freakin' blows my mind still, and it's been almost 10 years for me...

Yes -- the likelihood of being transplanted raises as your lung function lowers -- now they use the LAS / Lung Allocation Scoring system to determine where you are on the list, and who gets transplanted first... There is a window they're looking for -- they need you sick enough to be transplanted, yet healthy enough to survive the procedure -- and they do not want to do anything early because they do not want to take the chance of reducing the years of your life... Yet, as you point out -- there is an issue with quality of life...

I'm glad you have your beautiful horse -- and that you're surrounded by a lot of love -- it always seems we CFers are surrounded by love, and that's a pretty wonderful thing... Do your darndest to keep your weight up -- and keep as active as possible -- keep those muscles moving and working... If your weight is in a good place, and you're relatively active -- it will make recovery, and life after transplant so much easier!!!

And Oh-my-God -- is not coughing all the time AWESOME!!! Unfortunately, my 6-pack abs (from coughing) has been replaced by a pony-keg (I have a bit of a belly now...) But the breathing is amazing... And it's not just that -- it's the TIME we're given with our new lungs... Yes we have transplant meds -- but usually no more IVs, no more inhaled meds that can take a few hours to administer... No more chest PT or vest -- which can be another 4-8 hours daily... You're given so many more hours in a day, and the energy to actually do something with them!!!

I hope you get the call quickly -- and I hope your journey to and through transplant, and your life afterwards is as amazing as mine has been... If you want to see a little more of my story, and about my donor, you can go to this link...

Take care, Gen!!! I'm sure we'll be chatting... Love, Steve
Comment by Genevieve on February 10, 2010 at 8:21pm
Hi All - I have just joined and just getting used to where everything is here! It's a bit like facebook isn't it - bit confusing to start with!

Steve I just read your post. Thats really awesome. I can't believe you had 4 false starts, that must have been so hard - and 10% lung function wow.... :(

Well my lung function is a bit higher than that and it's hard enough now. How on earth did you do it Steve!!

It's about 30% and I've been waiting 9 months for new lungs. I could have waited longer to be listed, but I am not happy with my quality of life, so that propelled my decision to get earlier. Plus I am a common size and common blood group so they said I could be waiting up to 2-3 years, so I had to factor that in as well.

Most of the CFers I know of, seem to wait a lot longer, as in, wait for their lung function to be lower.

I am off oxygen completely, and don't particularly want to wait further to get to that point. I have a horse to look after, and having to walk around with oxygen I think would be just too difficult! I find it hard enough as it is, with my breathing.

I spend a lot of time at home now, resting and sleeping. Anyway, life is as good as it could be in the circumstances - I am surrounded by a lot of love, and hope that I can get back to enjoying my beautiful horse, when I get new lungs.

Will be nice not having to cough up half a cup of flem a day...haha!

Hope everyone is having a nice day, Gen :)
Comment by Steve Ferkau on January 7, 2010 at 8:01pm
Hi Risa!!! If you received a gift for all of the gifts you've given others, burning the wrapping paper could keep us all warm into the next century!

A more complete, yet brief, bio of me is at the My Angel Foundation... And, I contribute to a blog about organ donation at Revive Hope.

I struggled with lousy, cystic fibrosis lungs for almost 40 years -- by the end, my lung capacity was around 10% of expected and I was on oxygen around the clock -- but, not enough to make me comfortable, only enough to survive because I was also in CO2 retention. After four "false alarms", I was given two beautiful, new lungs in April, 2000. A few years later, I learned my donor was a beautiful 17-year-old girl from Iowa named Kari.

I've been breathing with her lungs for almost 10 years now, and it still amazes me to be able to breathe like I do -- and I think of Kari throughout the day, every day... I do a fair amount of public speaking telling people about Kari, and through her story and mine, about the importance and the need for organ donation. I let people see how I feel about Kari -- that she will forever be my hero -- and I hope that they think that maybe it will be neat to be someone's hero when they leave this beautiful planet...

I contribute pretty often at Transplant Buddies -- I learn an awful lot there, and I know that it benefits people traveling the journey I've already traveled... And it gives them hope, when they see someone still chugging along with another precious person's lungs after 10 years...

For the past 7 years, I've also taken the stairs 94 floors to the top of the John Hancock Center in Chicago to honor Kari -- and I've had many of her friends and volleyball teammates on my "Kari's Klimbers team. I have a little website dedicated to Kari and our climb at www.ClimbingForKari.org
Comment by Hostess Risé on January 7, 2010 at 7:09pm
You know the feeling when you receive a gift from a friend that is unexpected?
Well that was the feeling I received when I logged onto this website just now.

Thank you, Marjolein, Steve and Sylvia for joining us.

Please describe yourself in a few sentences so others can get an idea who they would like to direct a question to.

Here is a tx kiss TXoxoxoxoTxoxoxox
 

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