Monday, May 7, 2012

I Think The Right Word is RIDICULOUS!

Let me just start with thank you so much to everyone. The support I've received has been truly moving, and honestly a light during a kinda dark time. It all started with Crohn's Disease. As a lot of you know I've been dealing with Crohn's for 27yrs now. At some point during the last 4yrs I contracted Hepatitis B. - unknowing to myself and my GI at the time treating me. I had gone through most of the Crohn's meds at the time, and was put on Humira. A very important thing about Humira is - having Hepatitis B and being on Humira is BAD. The combo of the two caused my liver to fail and extensive Cirrhosis; a liver transplant was necessary. When you are a candidate for organ transplant they work you up from top to bottom. Any issues - even small ones - could become serious due to the surgery and medications...this was Oct 2010. For some reason I started developing breathing problems. It was incredibly difficult to take a breathe in. By May of 2011 I required Oxygen all the time. Initially it was assumed I had Hepatopulmonary Syndrome. - which is caused from the liver and cirrhosis. After countless tests and about eight months of basically wasted time, it turned out I DID NOT have Hepatopulmonary Syndrome! Fast forward to the last few months ... I had an EMG done of my diaphragm and found that the Phrenic Nerve which controls the diaphragm was fried ...dead ...fired its last brain message - it will never work again. Due to the diaphragm the prospect of a transplant went out the window. The reason transplant is not possible is they put a breathing tube in for surgery, and recovery. The doctors feel strongly that once the breathing tube is put in I would never come off of it...ever. Right now docs are monitoring my liver very closely, and crossing bridges when absolutely necessary.

I was referred to a neuro muscular specialist because the odds of the nerve issue being isolated to my phrenic nerve was very low. For some unknown reason I started getting extremely painful muscle contortions/seizures, double vision, and eventually rigidity. I literally felt as if I was turning to stone; any movement and wowzers did it hurt. The neuro muscular doctor ran an EMG of my leg, and took blood to check levels such as calcium, vitamin D, etc. The EMG findings fit best with Motor Neurone Disease or  Lumbosacral Radiculopathy.  I need an MRI of my spine...which is this Wednesday May 7th. The blood work was interesting - it showed my calcium was critically low, vitamin D was undetectable, severe anemia, and a specific hormone was extremely elevated (the normal range is 0-65 ...65 being high. Mine was 820 (the endocrinologist actually said she had never seen a number that high). The hormone that was elevated is called PTH. It happens to be created by 4 tiny glands inside the thyroid called Parathyroids. When calcium is out of wack the body they over produce the hormone PTH. Since my calcium was critically low I have what is called Primary Hyperparathyroidism. In 95% of cases surgery is done to remove the over active glands. BBBBBBBBBBBBBBBBBBBBBBBBBBBUT doctors are very hesitant to do ANY surgery on me because of the diaphragm. Along with the lovely low calcium I have osteoporosis along with renal-hypertension. Ridiculous isn't it?

To break it down:
1. Crohn's Disease
2. Liver Failure w/ Cirrhosis
3. Portal Hypertension
4. Hepatitis B
5 Primary Hyperparathyroidism
6. Renal Hypertension
7. Paralyzed Diaphragm
8. An undiagnosed neuro muscular disease (still running diagnostic testing)
9. Osteoporosis
10. Critical Vitamin Deficiencies
11. And a crack in the instep of my left foot

I am going to have to wrap this up for now - my hands are starting to cramp up. I wanted to touch base and let people know what is going on. and of course to thank the amazing support in my life! I would be completely lost and alone with out all the amazing loved ones. Regardless of what happens as well ...I won't stop fighting until I physically and mentally can't do it anymore ...and I don't see that happening anytime soon.

17 comments:

  1. ((((((((((((((((((MWAH))))))))))))))))

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  2. Wow. Even thought there is so much happening, you still remain strong and courageous. The fight in you is very admirable. I hope things get better for you :)

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  3. Jason, I have little to say. My heart hurts for you.
    I seldom leave my house, and it gives me time to think. I really read into the steps of negativity in regard to the unreal complications you've encountered. You are strong, but I can't pretend to imagine having seizures, becoming stiff, cramping and so many "fun" symptoms. What I love about you is everything. You are so strong mentally & physically. I do ask God daily to have your donor and the sooner the better. I'm not quite sure if you are in a state of physical shape to be able to have surgery. You have taught so many of us to be strong. With each lousy diagnosis I get (Being unable to do anything)I think of how strong you are & hope to do as you & not be a complainer. You will forever have changed my life and though you believe in your way I still ask God for a good turn of events. It would be a "huge" one for sure, but any good progress would be a miracle. I miss you a lot, but I'm not selfish and want your pain to stop.
    Big Hugs, Oka:D

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  4. Stay strong Jason. You are a fighter and if anyone can overcome the odds it is you. :)

    rildebb1

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  5. You are an inspiration. Keep up the good fight, we're all behind you!

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  6. Ty for TELLING all of this...Thinking of you Daily and realizing you are the true FIGHTER..WARRIOR ...WINNER. Lots of love and LOVING thoughts for you Xxox

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  7. I'm with you 100% all the way. I love you so much. Big MWAAHHHHHHHHSSSSSSS!

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  8. keep fighting Jason, hugs galore xxx

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  9. Best wishes Jason.Bombhead 1969

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  10. Thank you all so much - I am beyond fortunate to have such caring people in my life.

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  11. HEALTH PROBLEMS SUCK! Love you lots. xoxo

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  12. You truly are an inspiration, keep fighting and I wish you all the luck in the world.

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  13. Keep fighting the fight. Lots of Crohn's sufferers around the world & lots of people who do care. You're definately not alone.

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  14. Jason, my doctor thinks I have hyperthroidism, but the meds don't help. I think maybe I have what you do and when I see him tomorrow, will ask for a blood test to check for PTH and parathyroidism. I've never heard of that until reading your post. Thanks for the information, I hope that's what it is and surgery can be done quickly to fix me. :)

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  15. I will be praying for you. You give me strength just seeing how strong & motivated you are. Your blog made me step back & really take a good look at my life. I have a lot of health issues as well, including crohns which requires me to have an ostomey & ruematoid arthritis to just name a few. Best wishes Jason!

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