James' Story

In October 2009, James contracted the H1N1 Flu. It developed into a severe pneumonia, and James' health rapidly deteriorated. He became oxygen-dependent. A double-lung transplant became necessary for long-term survival. It was not a cure, but it would extend his life and greatly improve his quality of life.

 
In November 2009, James moved to Toronto in hopes of qualifying for a double-lung transplant. He was in and out of the hospital. He struggled to maintain his weight above 90lbs. It took James 10 months to become stable enough to qualify for transplant. James waited another 9 months on the transplant list. On May 12, 2011, James received the double-lung transplant that would save his life. He proposed several hours before heading into surgery. Our dreams would finally become a reality.


James' recovery was remarkable. He had few complications. He had a quality of life never known to him. He gained 40lbs. He was happier and healthier than he had ever been. The next year was the best year of our lives. We were finally able to plan for the future. We lived together in Toronto. James was also able to return home to British Columbia to visit his family and friends on several occasions.

In May 2012, James celebrated his 1-year post-transplant "lungiversary" with strength and optimism for the future.



In the following weeks, James noticed a slight decline in his lung function. A bronchoscopy revealed A1 rejection. A1 rejection is a very common and minor form of rejection that does often not require treatment and resolves with time. James' lung function continued to decline at a slow and gradual rate.

On July 2, 2012, James and I were married. It was a magical evening of love and joy. It was truly a celebration of life. (Read the story of our first date at The Grid Dating Diaries with psuedonyms "Jon" and "Amy").



The following day, James' lung function took a sharp decline. Another bronchoscopy confirmed the continuation of James' A1 rejection, in addition to inflammation without known cause or origin. James was given approval to return home to Victoria in British Columbia in mid-July. We were thrilled to start our lives together, but James' lung function took another sharp and rapid decline. His lung function had decreased from 70% in May to 35% in mid-July.

James was diagnosed with bronchial obliteratons syndrome (also known as chronic rejection, or lung allograft dysfunction). James had no signs of rejection or infection. This was diagnosis of exclusion. We spent the next few weeks in and out of hospitals for tests and appointments. James received high dose steroids, antibiotics and anti-virals with no improvement in lung function.

James continued to decline on a daily basis. We were advised to return to Toronto immediately to seek a second transplant. We took the next available flight. We arrived in Toronto on August 31, 2012, and James was admitted to Toronto General Hospital through the ER the following day. It had been exactly two years since James' was first listed for transplant. We never imagined we would be on this journey again in only a few short years.


James' lung function continues to decrease. He is often short of breath and struggles to breathe on exertion. There are few treatment options available. James has end stage lung disease and is in active lung failure at 25% lung function. He will need another lung transplant to survive.


Update (October 23, 2012): James is at 13% lung function. We will find out by the end of the week whether James will qualify for re-transplant.

Update (February 23, 2013): James was moved to the ICU on February 9, 2013 and intubated on a ventilator. He was temporarily on hold for transplant, but it now active again on the list. He had emergency surgery, because of high carbon dioxide levels, and was placed on ECMO (extra-corporeal life support, or rather, an artificial lung). He turns 29 years old today!

Update (May 29th, 2013): James headed to the OR for his second double lung transplant. Our gratitude is endless.

Update (July 15, 2014): We completely forgot to update this page! James is more than one year post-transplant, and enjoying each and every single day!

5 comments:

  1. Hi Jamie and Adena,
    It's Emma at Lady Minto. We are wondering if it would be at all possible to connect Al with Jamie through Skype. We would be more than happy to facilitate this on our end if you let us know what time would work for you, if it is possible. We are all thinking of you both and of Kathy and we send love and best wishes from Salt Spring Island.
    Emma

    ReplyDelete
    Replies
    1. Dear Emma,
      Thank you so very much for your message. Please give our love to Dad. We miss him a lot. We can't wait to be back on the West Coast with him. Kathy and I might be able to Skype with Dad, but James is not able to speak, because of his tracheostomy. He is able to write. We will try to get a letter to Lady Minto. We really appreciate your love and best wishes. Kathy and I will be in touch. All the best,
      Adena

      Delete
  2. Hi James
    mum son Joshua is on ecmo and your story.is exactly the same
    we are also waiting on a second transplant
    He's been on ecmo for six weeks
    The past 2 weeks he's been really keeping himself as fit as he can lots of physio and as much cycling as he can
    keep going and you will get there
    all the best
    daren UK

    ReplyDelete
  3. Hi Alena,
    I work with Cystic Fibrosis Canada - Toronto & District Chapter. It would be great to get into contact with you. Would you be able to email or call me?
    Contact info can be found here: http://www.cysticfibrosistoronto.ca/about-us/chapter-staff

    Thanks,
    Andrew
    416-932-3900 x. 225

    ReplyDelete
  4. MY NAME IS MARIAM FROM SOUTH AFRICA...I SAW THIS COMMENT ON POSITIVE BLOGS AND I WILL LOVE TO TELL EVERYBODY HOW MY STATUS CHANGES TO NEGATIVE, AND AM NOW A LIVING WITNESS OF IT AND I THINK ITS A SHAME ON ME IF I DON'T SHARE THIS LOVELY STORY WITH OTHER PEOPLE INFECTED WITH THIS DEADLY VIRUS...,HIV HAS BEEN ONGOING IN MY FAMILY... I LOST BOTH PARENTS TO HIV,. AND IT IS SO MUCH PAIN IVE NOT BEEN ABLE TO GET OVER.. AS WE ALL KNOW MEDICALLY THERE IS NO SOLUTION TO IT..AND MEDICATION IS VERY EXPENSIVE..SO SOMEONE INTRODUCED ME TO A NATIVE MEDICAL PRACTITIONER IN AFRICA..I HAD A JOB THERE TO EXECUTE SO I TOOK TIME TO CHECK OUT ON HIM.I SHOWED HIM ALL MY TESTS AND RESULTS.. I WAS ALREADY DIAGNOSED WITH HIV AND IT WAS ALREADY TAKING ITS TOWL ON ME.. I HAD SPENT THOUSANDS OF DOLLARS SO I DECIDED TO TRY HIM OUT...I WAS ON HIS DOSAGE FOR 1 MONTHS. ALTHOUGH I DIDNT BELIEVE IN IT, I WAS JUST TRYING IT OUT OF FRUSTRATION... AND AFTER 2 WEEKS, I WENT FOR NEW TESTS... AND YOU WONT BELIEVE THAT 5 DIFFERENT DOCTORS CONFIRMED IT THAT AM NEGATIVE..IT WAS LIKE A DREAM,,I NEVER BELIEVE AIDS HAS CURE..AM NOW NEGATIVE,,AM A LIVING WITNESS..I DONT KNOW HOW TO THANK THIS MAN... I JUST WANT TO HELP OTHERS IN ANY WAY I CAN..HAVE JOINED MANY FORUMS AND HAVE POSTED THIS TESTIMONIES AND ALOT OF PEOPLE HAS MAIL AND CALLED THIS MAN ON PHONE AND AFTER 2 WEEKS THEY ALL CONFIRMED NEGATIVE..BBC NEWS TOOK IT LIVE AND EVERY.. HOPE HE HELPS YOU OUT.. EVERYBODY SAW IT AND ITS NOW OUT IN PAPERS AND MAGAZINES THAT THERE'S NATIVE CURE FOR HIV AND ALL WITH THE HELP OF THIS MAN,,HAVE TRIED MY OWN PARTS AND ALL LEFT WITH YOU,,IF YOU LIKE TAKE IT OR NOT..GOD KNOWS HAVE TRIED MY BEST.ABOUT 97 PEOPLE HAVE BEEN CONFIRMED NEGATIVE THROUGH ME..AND THEY SEND MAILS TO THANKS ME AFTER THEY HAVE BEEN CONFIRMED NEGATIVE,,THIS MAN IS REAL..DON'T MISS THIS CHANCE,,HIV IS A DEADLY VIRUS,,GET RID OF IT NOW..
    case there is anyone who has similar problem and still

    looking for a way out, and he those cast all kind of spell like ::
    Love Spells
    Luck, Money Spells
    Health, Well Being
    Protection, Healing
    Curses, ex, Breakups
    NEW! Combo Spells
    High Priestess Spells
    Vampire Spells
    Authentic Voodoo Spells
    Custom, Other Spells
    Business spells
    Health/Healing spells
    Cancer healing
    Curse removal
    Job spells
    Healing from all kind of diseases
    Love binding
    Barrenness(need a child)
    Need love
    Lottery Spells
    Promotions
    Success
    Money rituals
    winning court case
    Divorce spells
    Low sperm count
    Infertility in women
    Breast enlargement/reduction
    Penis enlargement/reduction
    Diabetes
    Arthritis
    sicklecell
    YOU CAN CONTACT HIM HERE AS (dr.abalaka@outlook.com) and also his state based number text him here if you're in the US: 760-935-3804 if you need any question contact me via here as mariambaurice@gmail.com i wish you best of luck and good health.

    ReplyDelete