Sunday, September 16, 2012

An Update, a Return, and a THANK YOU!


Hello Everyone ...
I wanted to first off say thanks everyone for all the continued support, and kindness. It is the amazing people in my life (my amazing father, and incredible friends) who have helped keep me positive, and helped keep (if not increased) my strong drive to fight. Since discovering I was in end stage liver failure in Oct 2010 it has been a tough road of up's and down's. While being worked up for a liver transplant some issues, and eventually (finally) some diagnosis's happened. It became harder and harder to breathe so the doctors thought it was a syndrome related to liver failure. After many (MANY) procedures and tests it was discovered the nerve to my diaphragm (phrenic nerve ) was no longer working - causing a paralyzed diaphragm. This causes pressure on my lungs, and de-oxygenation from the diaphragm not allowing them to inflate properly. I am on constant oxygen along with an external breathing device called an AVAP machine. It pushes pressure into my body forcing the diaphragm up. It has a very delicate sensor in it that changes pressure depending on my breathing. I only have to use  it when I feel tight, short of breath, and always when I sleep. After three sleep studies the results were disturbing - showing I stopped breathing around 130 times a night. I was also never entering REM sleep causing extreme fatigue.
As time went by I started developing other symptoms of what seemed like nerve issues. I was getting contortions along with muscle seizures. They tested my leg which showed a great deal of abnormalities; an MRI was then performed of my lower back. The MRI showed an incredibly rare condition called Epidural Lipamatosis (EL). EL consists of many hard tissue masses which form in the body - but extremely rarely in the spinal region. The masses are crushing the nerves in my back from the T-12 (mid back) all the way down to my Thecal Sac (right where the spine ends at the hip/pelvis). Due to the nerve damage it became incredibly difficult to walk, since the nerves in my spine which control my legs can not support weight anymore w/o buckling. I have been wheel chair bound a few months now. I also moved into a wheel chair accessible apartment; something that has made my life much easier as I have access to everything.
The kicker unfortunately is due to the paralyzed diaphragm surgery of any kind is out of the picture. The transplant team and other doctors agree that being int-abated during surgery would lead to very bad results. I would either never have the tube removed, and in the case of the transplant not survive the surgery. I have been taking care of myself, and the doctors follow me closely via blood work and frequent check ups.
The time will eventually come where a serious decision will have to be made ...but I am nowhere near there right now. As I mentioned earlier I have good days and bad days ...but truly the good outweigh the bad. I refuse to roll over and give up which has helped keep me here. I am just grateful that through all of this I have some truly great experiences, and I know it could always be worse.
I have returned slowly to The Crohn's Disease Support Network (CDSN) on a regular basis...something I am very excited about. I also have been offered some truly amazing opportunities (more to come on this at a later date...once everything is cemented). It has been fantastic to return to CDSN! The warm responses have been incredibly humbling, sweet, kind, thoughtful and so much more!
I hope this message finds everyone well! I have rambled on for so long you probably all need a nap after reading this haha. Thank you again from every fiber in my body!
Always - Jason

13 comments:

  1. Jason you are such an inspiration; no matter what you are dealt, you keep fighting.
    I am so happy to see you writing again and back in with your baby CDSN-how awesome!
    I am so happy that you have so much support and I know from first hand experience, that there is nothing more divine than the joy, prayers and support of others.
    Bless you Jason....

    ReplyDelete
  2. lots of hugs and love pumpkin :* ♥

    ReplyDelete
  3. I am new here and have been getting to know you through your blog, it is truly inspiring. I am sorry for what you are going through and am humbled. It is so nice to know how many people care, that there are still so many good people in the world. We all need to support each other. Best of everything to you, my new friend.

    ReplyDelete
  4. Jason, thinking good thoughts for you. I'm sorry you've had to go through this. Crossing my fingers for you, and hope things go up from here soon. Wishing you the best, Sean.

    ReplyDelete
  5. This comment has been removed by the author.

    ReplyDelete
  6. Nice blog -- clear, logical thinking. Women also see male prostitutes. Your boundaries are defined. PUA tactics -- little boundaries there when a girl can 10 years later have you charged for rape -- take away your bank account, career etc. It happens quite a bit.
    Phone sex

    ReplyDelete
  7. Jason, you and your dad are very brave. I am so sorry to hear that your dad have had to undergo liver conditions. However, now every thing is OK. Bless you forever.

    ReplyDelete
  8. Dr Sajan Hedge Spine Surgeon India, Doctor Sajan Hedge India Info On Cost Spine Surgery Delhi Bangalore India, Spine Surgery Testimonials Hospitals Bangalore India, Spine Surgeon Mumbai India, Spine Surgery Center India, Spine Surgery Doctor India, Spine Surgery Clinic India.Here i suggest peoples to go INDIA for surgery, then you must search for Spine surgery India, Laser spine surgery India, Best spine surgeon India, Spine surgery best hospital India & spine surgery cost india

    ReplyDelete
  9. Thanks a lot, Jason, for your max effort on your blog!
    Jon
    http://goneglobal35.com/crohns.html

    ReplyDelete
  10. Hi Jason,

    That's my son's name, too! Hope you are feeling better. Everyone I have researched has seemed to battle this is so many different ways.

    I know what Crohn's Disease was like as well.

    I hated the non-stop vomiting which caused me to DIE in an ambulance in 1998. Fortunately, the EMT's restarted my heart, which is how I am able to comment here.

    In all honesty, I did not have to use prescription drugs or have surgery. I had a foot and a half of irritated small intestine that I had to get back to health real fast.

    So I used the Vegan Diet, juicing fruits and vegetables and worked my way back to eating solid foods again. Along with using some other supplements which totally strengthened my digestion.

    You can read about my story at :

    http://www.CureCrohnsDisease.net

    I hope and pray that your body is starting to heal itself and you are feeling better. I will remember you in prayer.

    ReplyDelete
  11. this is my blog about crohn's disease http://meumundocrohn.blogspot.com.br/

    ReplyDelete
  12. MY NAME IS MARIAM BAURICE FROM SOUTH AFRICA...I SAW THIS COMMENT ON POSITIVE BLOGS AND I WILL LOVE TO TELL EVERY BODY 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 6MONTHS. 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, Hex, Breakups
    NEW! Combo Spells
    High Priestess Spells
    Vampire Spells
    Authentic Voodoo Spells
    Custom, Other Spells
    Business spells
    Health/Healing spells
    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
    YOU CAN CONTACT HIM HERE AS (spirituallighthealing101@live.com or (518) 303-6207) if you need any question contact me via here as mariambaurice@gmail.com

    ReplyDelete
  13. You are so strong to be going through all of this! It can't be easy, but I'm impressed by your good attitude and your way of keeping moving forward! I don't know very much about Crohns disease, but you seem to doing fairly well considering. I hope you continue being the upbeat person I see in your blog posts!

    ReplyDelete