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Vinny
Joined: 17 Apr 2007
Posts: 55
Location: Pennsylvania
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Hi all. Just wanted to let you all know that on Dec.15th, I received a dbl lung tx at the Cleveland Clinic. After three weeks I came home and slowly recovering.
The clinic did call Thurs. and said after my bronc Tues. they found slight rejection and I will be treated at home with solumedrol IV as they feel I don't need to go in the hospital. I guess early rejection is pretty common, I was told after I expressed my concern.
I really didn't have any symptoms like I was told to watch for,so I was kind of shocked when I was told of this. They lowered the prograf to .5mg morn. and .5 evening then they adjusted it yesterday to 1.0 morn.and .5 evening.
I am having pain near the site and napping often. Other than that,the new lungs are wonderful. I just feel like I can't fully expand them yet. Is this common early on?
I would appreciate any input you can give.
Thanks Vinny |
_________________
IPF diagnosis ..... Vats lung biopsy Jan 2004
Cleveland Clinic, listed for dbl lung tx on 10/11/2007. Received dbl tx 12/15/2007 |
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pat
Joined: 31 Dec 2002
Posts: 1504
Location: Maryland
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Vinny,
I am so happy for you. Early rejection is very common and they can treat it very well. It will take you awhile to regain your strength but every day will be better. Just keep doing what ever they say to do that is the most important thing. Trusting your transplant team is the best advice I can give.
Pat |
_________________
IPF/UIP:double lung transplant December 2000 University of Maryland Medical Center.
Be an organ and tissue donor!!! |
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Cheryle
Joined: 31 Mar 2007
Posts: 337
Location: Lawrenceville, Georgia
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Vinny,
Congratulations!!!!!
I'm so happy to hear your news of a new set of lungs.
Hooray!
Cheryle |
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Cheryle
DX ILD Nov 2006 Antisynthetase Syndrome (anti Jo -1antibodies), Jul 2007 Undifferentiated Connective Tissue Disease (UCTD), DX 3/08 CREST/ Limited Scleroderma |
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Connie
Joined: 30 Dec 2002
Posts: 68
Location: Michigan
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what great news! Congrats! After my transplant I too felt that I couldnt expand my new lungs. With each day and pulmonary rehab I was able to really blow those new "pipes" better and better.
I agree with Pat. Trust your transplant team and if you have any questions or concerns always call them. No matter how small you think your concern might be.
Best Regards,
Connie |
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Diagnosed with IPF in 1998 / Living related lobar lung tx at Duke Medical University Jan. 8, 2003
Jan. '09 diagnosed with Bronchiolitis obliterans |
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Mrs. W
Joined: 30 Jun 2005
Posts: 1959
Location: Wisconsin
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Such good news!   John has had the rejection problems without showing symptoms too. I guess that your body is always fighting the new lung somewhere. John just told me about expanding your new lungs, they explained to him that some people had to re-develope that ability. Keep going, and like Pat said, following their instructions. Any feeling general un-wellness, call coordiantor right away. Keep us updated.
God bless,
Pam and John |
_________________
Firefighter husband Sarcoidosis/PF. UW Madison right lung tx Nov. 8, 2005. Chronic Rejection 1/10 My Caregiver verse:"..Be strong and courageous. Do not tremble or be afraid, for the Lord your God is with you wherever you go." Joshua 1:9 |
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MaggieBee
Joined: 24 Jan 2007
Posts: 390
Location: Bellefonte Pennsylvania
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What wonderful news! I'm so happy for you! |
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The "Other" Maggie
Pulmonary Fibrosis and Pulmonary Hypertension
History of Sarcoidosis
Dx 2003 |
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marie
Joined: 13 Jan 2006
Posts: 480
Location: CT
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Vinny,
That's awesome! You're lucky to have been given a double lung transplant. I wish that everyone could a have double - I think it would make the odds better - my uneducated guess. |
_________________
Dad has IPF/UIP/COPD
Diagnosed May 2004
I will leave no stone unturned
The last stone was turned on August 18, 2006 |
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sandy50
Joined: 10 Mar 2006
Posts: 255
Location: pennsylvania
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Way to go Vinny. I'm very happy for you.Good luck with your new lungs. |
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Happy to be alive forever grateful to my donor and family whomever he or she may be. |
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BillyK
Joined: 24 Aug 2006
Posts: 743
Location: Yukon,OK
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Vinny
Congrats on the new lungs. It is very wonderful to hear good news amidst the bad news that we sometimes receive around here. |
_________________
God created transplants.
I have gone to find myself. If I get back, before I return, keep me here. |
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Nancy Johnson
Joined: 15 Dec 2005
Posts: 132
Location: Minnesota
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Congratulations Vinney, I am so happy for you! Take it easy and improve daily.
Nancy |
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Nancy
dx September '05 |
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Andi
Joined: 17 May 2004
Posts: 450
Location: New York City
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Congratulations on receiving your new lungs. |
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Diagnosed in 4/04 with IPF. Recieved life saving double lung transplant on 3/19/09 - just in time! |
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prairiecuzz
Joined: 02 Aug 2007
Posts: 303
Location: saskatchewn
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congratulations |
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Mary Jo, May 07, uip by olb, saskatchewan |
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KatG
Joined: 06 May 2006
Posts: 989
Location: Booneville Arkansas
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What wonderful news Vinney!!!!!!
I know that a double lung transplant is alot better than a single....I feel that if MAtt had one or at least had that old lung taken out sooner he might have survived longed...but I knowhe told me as much sickness and suffering that he went through, he would have the transplant all over again...We got to have another anniversary together and saw another new year in....
Keep your TX team informed on how you are feeling...KAtG |
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MAtt Griffin-Diagnosed IPF 05-02-06
Dying was flown to OKC 11-15-06
Single lung TX 12-03-06
Fought long and hard trying to live...
Freed from this world 1-21-08
New love and happily married-05-23-08
Still the memories will always remain... |
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Vinny
Joined: 17 Apr 2007
Posts: 55
Location: Pennsylvania
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Thanks all for your replies. It eases my mind to hear all the positives. I know there will be bumps in the road and I will continue to battle all the way. I'm feeling better every day,mentally and physically !! Thanks to all. |
_________________
IPF diagnosis ..... Vats lung biopsy Jan 2004
Cleveland Clinic, listed for dbl lung tx on 10/11/2007. Received dbl tx 12/15/2007 |
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Mrs. W
Joined: 30 Jun 2005
Posts: 1959
Location: Wisconsin
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Yes, Vinny- Where John was at by the time of the transplant, he too says he would do it all again "in a heartbeat".
Hang in there, we are praying for you,
Pam and John too <>< |
_________________
Firefighter husband Sarcoidosis/PF. UW Madison right lung tx Nov. 8, 2005. Chronic Rejection 1/10 My Caregiver verse:"..Be strong and courageous. Do not tremble or be afraid, for the Lord your God is with you wherever you go." Joshua 1:9 |
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