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From the UK
Replied May 6
From the UK
3 Replies
Started this discussion. Last reply by mark mcgrew May 13.
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Profile
- How are you touched by transplantation?
- I am a Recipient
- What is your city / state and country of residence?
- Essex/England
- If you are a recipient, what type of transplant did you receive?
- Double Lung
- Recipients: In this space, feel free to list those you are grateful to for receiving the Gift of LIfe:
- MY LIFE IS TRULY WONDERFUL NOW, THANKS TO THE MAN WHO SAVED MY LIFE. NO MORE COLLAPSED LUNGS, NO MORE PAIN, NO MORE BREATHLESSNESS, OXGYEN, OR WHEELCHAIR TO MOVE. I CAN DANCE, EXERCISE, BREATHE AND SMILE AGAIN. THANK YOU!!!! ALSO THANKS TO ALL THE TEAM AT HAREFIELD HOSPITAL (UK) NOT ONLY THROUGH MY HORRIFIC ILLNESS/TRANSPLANT, BUT MY RECOVERY PERIOD AFTER 3 WEEKS OF BEING IN A COMA. MY PARENTS FOR THEIR CONSTANT LOVE AND SUPPORT, AND TO ALL MY FAMILY/FRIENDS, AND SUPPORT FROM ALL OVER THE WORLD THROUGH MY WEBSITE.
- If you are a recipient, when did you have your transplant(s)?
- JULY 9TH 2006
- What is your principal transplant med(s)?
- ALENDRONIC, PREDNISOLONE, MYCOPHENOLATE MOFETIL, CO-TRIMOXAZOLE, AZITHROMYCIN, TACROLIMUS
- What is your hospital and, or doctor's name, city / state and country?
- DR. CARBY, HAREFIELD HOSPITAL, ENGLAND
- What do you do for a living?
- ARTIST
- About Me: Please use this space to tell the community about yourself and your unique experience with transplantation:
- I AM A BUBBLY, OUT-GOING LASS AND I HAVE A REAL ZEST ON LIFE THANKS TO MY MY NEW LUNGS. I SUFFERED THE WORLD'S RAREST LUNG DISEASE, LYMPHANGIOLEIOMYOMATOSIS (LAM) AFFECTING ONLY 1 IN A MILLION WOMEN, AND HAS NO CURE.
MY ILLNESS TOOK 10 YEARS TO DIAGNOSE AS IT IS SO RARE. I SUFFERED 2 RIGHT LUNG COLLAPSES IN MY EARLY 20'S AND HAD AN OPERATION THAT PINNED MY RIGHT LUNG TO MY RIBS. THE REASON FOR MY COLLAPSED LUNGS - I WAS TOLD WAS THAT IT IS COMMON IN TALL,SLIM,ATHLETIC PEOPLE TO HAVE THESE. THE OPERATION WAS TO PREVENT ANY FURTHER RIGHT LUNG COLLAPSES.
MY PAIN CONTINUED OVER THE YEARS AND IT WASN'T UNTIL I WAS 32, THAT MY LEFT LUNG COLLAPSED. IT WAS ALL A SUDDEN DOWNHILL SPIRAL WHEN MY ILLNESS WAS CONFIRMED AS END STAGE/ADVANCED LAM. I WAS TOLD THAT MY RIGHT LUNG NO LONGER FUNCTIONED AND I WAS ONLY SURVIVING ON A SLICE OF MY LEFT LUNG. I HAD 12-18MONTHS TO LIVE, AND NEEDED A TRANSPLANT TO SURVIVE. MY LEFT LUNG THEN COLLAPSED 13 TIMES WITHIN 8 MONTHS!! 3 OF THOSE LEFT LUNG COLLAPSES WERE WITHIN A WEEK AND LEFT ME FIGHTING FOR MY LIFE, SAYING MY GOODBYES/FUNERAL WISHES TO MY DAD.
EMERGENCY AND GROUND BREAKING SURGERY WAS PERFORMED AFTER MY 3 LEFT LUNG COLLAPSES WITHIN THAT WEEK, AS I WAS DYING. HOWEVER, A FOUR HOUR OPERATION - TURNED INTO A 3 WEEK COMA FOR ME. I CONTRACTED MANY INFECTIONS INCLUDING MRSA, AN EYE INFECTION THAT ALMOST MADE ME BLIND IN ONE EYE (A TOP LONDON EYE SPECIALIST WAS BROUGHT IN) AND AGAIN WAS LEFT FIGHTING FOR MY LIFE. WHEN, THE DECISION WAS MADE TO WAKE ME UP - THAT HAS TO BE THE HARDEST BATTLE OF MY JOURNEY. I HAD TO LEARN HOW TO WALK AGAIN AFTER MY BODY HAD WASTED AWAY. I WAS UNABLE TO EAT FOR ALMOST 2 MONTHS, AND UNABLE TO TALK FOR MANY WEEKS. I SUFFERED FROM SO MANY PANIC ATTACKS AND KEPT SAYING (MOUTHING)THAT "I'M DYING..I'M DYING" I WAS PETRIFIED!! AND ALSO THAT I COULDN'T COMPREHEND WHAT HAD HAPPENED TO ME..THAT I WAS UNABLE TO BREATHE FOR MYSELF AND HEARING A MACHINE BREATHE FOR ME AS MY LUNGS HAD PACKED UP..IT WAS ALL TOO MUCH. MY HEART SUFFERED TOO AND ON 2 OCCASSIONS MY HEART BEAT WAS RACING OVER 250 BEATS PER MINUTE (WHICH WAS TRAUMATIC TO SAY THE LEAST). MY LEFT LUNG STILL COLLAPSED EVEN AFTER THIS GROUND BREAKING SURGERY..AND MY TIME WAS RUNNING OUT. I ENDED UP LIVING AT THE HOSPITAL FOR 6 MONTHS WAITING AND HOPING THAT I WOULD GET A PAIR OF LUNGS.
FROM A ONCE ACTIVE PERSON, FULL TIME JOB, DANCER, KIDS ENTERTAINER AND A GREAT SOCIAL LIFE...I BECAME A VEGETABLE UNABLE TO BARELY WALK/BREATHE, OR DO ANY SIMPLE DAY TO DAY TASKS WITHOUT HELP AND GASPING UNTO ANY BIT OF BREATH THAT I COULD PUT TOGETHER.
EVEN THROUGH MY "DARK" PERIODS I DID REMAIN POSITIVE AND A SENSE OF HUMOUR SHOWED EVEN IN THE MOST HORRIBLE SITUATIONS. I DIDN'T WANT TO GIVE UP HOPE, AND DID EVERYTHING THAT I WAS TOLD TO DO..AS I NEEDED TO BE SLIGHTLY STRONG TO BE ABLE TO HAVE A TRANSPLANT AND NOT TOO WEAK THAT I WOULDN'T PULL THROUGH MY 10 HOUR OPERATION.
AFTER 16MONTHS OF WAITING AND 3 FALSE ALARMS - MY LIFE WAS SAVED IN 2006. THE DAY I AWOKE FROM MY TRANSPLANT - I WAS SMILING..WAVING MY HANDS IN THE AIR..AND I COULD BREATHE PROPERLY FOR THE 1ST TIME IN YEARS.
I DID HAVE A ROCKY JOURNEY AFTER TRANSPLANT WITH A RARE VIRUS CALLED, RSV..AND MY TEAM OF DOCTORS WERE LIKE - IF IT WAS GOING TO HAPPEN TO ANYONE - IT WOULD BE YOU! RARE DISEASE AND NOW RARE VIRUS, AND I LAUGHED!! I ALSO CONTRACTED MRSA AGAIN. SHINGLES AND OTHER INFECTIONS.
THE PRESENT:-
I LOVE TO PAINT, DANCE, EXERCISE, AND AT PRESENT I AM TRAINING FOR SPRINTING EVENTS FOR THE EUROPEAN AND UK TRANSPLANT GAMES THIS YEAR. I AM HOPING TO DO WELL, SO GET ENTERED INTO THE WORLD TRANSPLANT GAMES IN AUSTRALIA 2009!! I HAVE BEEN DOING HEAPS OF MEDIA CAMPAIGNING HERE IN ENGLAND TO RAISE AWARENESS ON THE IMPORTANCE OF BEING AN ORGAN DONOR, MY RARE ILLNESS, AND ALSO FUND RAISING FOR LAM TO HELP RESEARCH INTO FINDING A CURE. I REALISE - LIKE OTHERS WHO HAVE RECIEVED THE GIFT OF LIFE..HOW LUCKY I AM, AND EVERY DAY IS A BONUS FOR ME. I ALWAYS SMILE, AND APPRECIATE MY LIFE HEAPS!!
- How did you find out about TransplantCafe.com?
- Kathryn, a friend in usa who also has had transplant
- What is your relationship status?
- In a Relationship
- My Personal (non-commercial) Website, Page, or Blog URL:
- http://WWW.JUSTINELAYMOND.COM
Justine's Blog
Hear me on the Radio LIVE TODAY..B QUICK or link gone by 24TH JULY, as Radio show dubbs it over
Posted on July 23rd, 2008 at 8:30am —
5 Comments
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European,UK,USA -Transplant Games..and 4th July+World Tranx Games Query...
Posted on July 5th, 2008 at 3:00am —
3 Comments
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Greetings all from the UK Transplantee..Update on Me
Posted on June 15th, 2008 at 11:26pm —
2 Comments
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Comment Wall (136 comments)
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Hey. Kewl, what were UR 3 medals N?
We dont have seperate games for Heart/lung trx. here
as far as i know? Glad U did well N Njoyed UR games.
Glad to hear from you...All's well in Santa Fe..
when are the games that you'll be attending? Good luck with them and just take each event in stride....I re-read your bio and words can't express how much you have endured, I can only imagine...I'm so glad to see that you never gave up and that you are doing awesome!!!
....aoubt the medals, I sent them via FedEx ground...lol..., so they should be arriving shortly...
Hope all is well...
Troy
So where were the games in Fance? (I luv southern France
near the pyreneese (? on spelling :) especially.)
Cool that yall have games for a specific trx. type... that would b
kindo cool. Good luck w the Euro games.
I am still on the mend, no running since i got back, but have
played a few basketball games. Trying to b sure i'm healed up for
the canadian games which start on Aug. 4.
Thank you....the Games were an AWESOME experience...good to hear that you are doing well. I'm thinking about doing the international games in Aus in '09, have you ever been?
Sure thing....I'll put the medals in the mail.....hehehehe.....
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