| Author |
Message |
natasha
Member
Username: Tashyy29
Post Number: 11
Registered: 02-2010
| | Posted on Thursday, May 24, 2012 - 09:14 am: | 
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Hi Guys!
I have a question for you retransplant patients out there. I had a second double lung transplant three months ago (after 8 years with my first double lung transplant) and I'm struggling with my FEV1, it's only come up to 69%, where my FEV1 with my old lungs was 112% for 5 years until I came down with chronic rejection. Yesterday my nurse told me she's never met a retransplant patient with an FEV1 of over 70ish percent. I was shocked. I just had expected these lungs to reach 100% like my old lungs, and she then continued to tell me even that was very rare that my first lungs reached 100% and most patients don't. So, my question to all you retransplant patients is what is your FEV1? And how long did it take to peak after your retransplant? My doctor says retrasplant numbers usually take 6 - 12 months to peak (my first lungs peaked at 3 months)
Thanks for all your imput! |
Tamara
Member
Username: Heppygirl
Post Number: 85
Registered: 05-2011
| | Posted on Thursday, May 24, 2012 - 09:49 am: |
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Mijne is on 72% now for a year.. Don't think I get any higher.. But a lot of my friends have reached 80/90/100% and some even 110/115!! So it IS possible, but not all lungs are the same unfortenately.. Wish I could go higher but.. I'm afraid I'm stuck at this number.
Well it's better than 10% ;)
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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natasha
Member
Username: Tashyy29
Post Number: 13
Registered: 02-2010
| | Posted on Thursday, May 24, 2012 - 09:58 am: |
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Tamara,
Thanks. You're right, better than 10%! Is this your first transplant, or your second? |
Tamara
Member
Username: Heppygirl
Post Number: 86
Registered: 05-2011
| | Posted on Thursday, May 24, 2012 - 11:13 am: |
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Hi
This is my first transplant, so is it from my friends who blow 80/90/100/110 (different people haha) it's so different per person!
I have to say, it took my 7 months to get there.. So maybe yours will still rise!
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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natasha
Member
Username: Tashyy29
Post Number: 14
Registered: 02-2010
| | Posted on Thursday, May 24, 2012 - 12:44 pm: |
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I guess I never realized that it was so different. My first lungs were 112% and anyone I knew was around 100% as well with first lungs. But I am looking for more info on retransplants as I don't know anyone that had a retransplant. |
Happy2Bhere
Forum Leader
Username: Happy2bhere
Post Number: 4595
Registered: 02-2008
| | Posted on Thursday, May 24, 2012 - 01:45 pm: |
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Natasha, the creator of this website Rise' is a twice transplanted double-lung recipient. FYI
Maybe she will join this discussion although she is quite busy from time to time.
Ol' Bob
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ajs
Forum Leader
Username: Ajs
Post Number: 746
Registered: 03-2008
| | Posted on Thursday, May 24, 2012 - 07:01 pm: |
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Natasha,
There is one little thing about FEV1 after transplant....it goes by your criteria, when it actually should almost be judged by your donor's criteria. They just won't reveal that. I'm 5'10" 195, my lungs had shrunken with the PF, and along with them, the lung cavity. So I needed smaller lungs than my 'original equipment'. From what I can tell, my donor Jody was thinner and maybe a bit shorter than me. So when I blow 85%, the same numbers may have been a higher % for him. It's hard to go by percentages for FEV1.
And fyi, I didn't peak until over two years after. Good luck!
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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natasha
Member
Username: Tashyy29
Post Number: 15
Registered: 02-2010
| | Posted on Friday, May 25, 2012 - 07:24 am: |
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Ajs so true! Thank you : ) |
natasha
Member
Username: Tashyy29
Post Number: 17
Registered: 02-2010
| | Posted on Tuesday, May 29, 2012 - 08:38 am: |
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retransplants where are you?? : ) |
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 17391
Registered: 05-2003
| | Posted on Wednesday, May 30, 2012 - 01:53 pm: |
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Hi Natasha
My second double lung transplant- cut to the chase- My numbers keep on improving. I will write back soon. I have been super busy.
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Paulina
Member
Username: Paulinamodzelewska
Post Number: 2
Registered: 01-2014
| | Posted on Sunday, January 12, 2014 - 06:40 am: |
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Hi Natasha
I am looking for help. I am from Poland and my dad had a lung transplant six years ago now he have about 20% of his lung. Could you help Us? We are looking some good clinic in Usa who do the re-transplant. If i can ask You. Can you tell me where did you do your re-tansplan?
thanku you for your helping
Paulina |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 17972
Registered: 05-2003
| | Posted on Sunday, January 12, 2014 - 02:45 pm: |
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Hi Paulina
I am sorry to hear your dad is in need of another transplant.
There are many transplant centers in the USA
I would contact DUKE University as i know they retransplant lungs probably more than many centers. I would also contact Cleveland Clinic in Ohio.
Please keep me updated and maybe I can think of more ideas for you.
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Paulina
Member
Username: Paulinamodzelewska
Post Number: 4
Registered: 01-2014
| | Posted on Monday, January 13, 2014 - 02:57 pm: |
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Hello Rise,
Thank you so much for the quick response and your suggestions, I really do appreciate it. I will definitely contact those two places. Do you by any chance know if the fact that my father is not a US citizen will cause any difficulties throughout the process?
Best Regards,
Paulina |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 17974
Registered: 05-2003
| | Posted on Monday, January 13, 2014 - 04:23 pm: |
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Hi Paulina
I am sorry but I cannot answer that question. I would definitely try your best and contact the centers that I shared. I would imagine that citizenship would not matter at all.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17976
Registered: 05-2003
| | Posted on Monday, January 13, 2014 - 04:30 pm: |
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I was retransplanted at Jackson Memorial Hospital here in Florida. You can also contact them. I was their first retransplant after so many years out of my first transplant.
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