Transplant news… the final decision…

So much has been happening with my family lately and I really haven’t had the time to write or pay much attention to my blog, or my LIFE for that matter.  I’ve also had some pretty serious decisions about my own health that I’ve had to come to terms with.  I’ve talked, pretty much, about my need for a complete intestine transplant and the expiration date that the good doctors have labeled me with.  Well…  on my birthday a few days ago, a FINAL decision was made.

For those of you who don’t know what’s going on, I’ll try to explain briefly.  I have a rare bleeding ulcer disease.  There’s no name for it because there’s nobody known living with this exact condition.  Basically, I have ulcers that eat through my intestine and stomach tissue that causes excessive bleeding.  The best way I can explain it is to tell you that it’s similar to a cancer but it doesn’t spread beyond my digestive tissue.  Although there are no tumors.  Just disease.  I’ve had more surgeries than I can remember the number.  They’ve had to take out my entire stomach to stop the bleeding and they’ve had to reroute my entire digestive system.  If you saw a picture of what I look like on the inside, you wouldn’t recognize it as a human digestive system.  I’ll bet you didn’t know you can live without a stomach, did you?  I didn’t.

I’ve gone through years of hospitalization, coma, death (my surgeon has literally brought me back to life on more that one occasion), blood transfusions (again, too many to count).  The last major event occurred last July.  I was within weeks of being able to consider myself no longer “terminal”.  They gave me the label “terminal” because every time they do surgery to get rid of the ulcers, more ulcers would grow at the incision site.  It was like my body was eating itself and NOBODY, NO specialist could figure out a way to stop this from happening.  Naturally, when your body eats itself, it is NOT compatible with life. They told me that if I could live a year without hospitalization, blood transfusions or surgery, they would lift the term “terminal” as they would have reason to believe that my body was in the process of healing itself (as human bodies CAN do).  Well, last summer, if I could have made it to August, I would have been considered in good enough health, or recovering.  I didn’t make it to August.

In July, while home alone, I passed out in the bathroom.  The weird thing is that I don’t have warning, or much warning.  I just felt like I was having trouble breathing and I passed out with dizziness.  I know that this seems like warning enough for most people but when you’re so used to being sick all the time, you just begin to feel like these little signs are “normal”.  I’ve passed out before and have received concussions from hitting my head on sharp objects.  THIS time, I didn’t get a concussion but I was able to wake up and crawl to the phone to call 911.

By the time I arrived at the hospital, I needed over 8 units of blood to stabilize me.  I’d passed out due to loss of blood.  I was immediately placed in intensive care where they proceeded to call all my family and tell them that this was “the end”.  Nobody felt I’d ever recover because my organs had begun shutting down.  I don’t remember much of my stay in the hospital but my family sure does and they STILL don’t like talking about it and won’t let me know exactly what happened.

However, I DID recover.  I attribute this to God and SO MUCH PRAYER.  Prayer vigils were held by family and people I don’t even know.  Nobody expected me to leave the hospital alive.  I’d lost so much weight and could barely walk.  My muscles had begun to atrophy.  The important thing is that I DID walk out of the hospital.  VERY slowly.  Here’s a picture of me taken 1 week after I was released.

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I don’t like looking back on these pictures because I look so bad.  I was too weak to walk on my own and I had to hold on to a wheel chair just to hold me up.  Most of the time, my husband had to push me in a wheel chair so that I could go places and pretend to be normal.  You can see here that I’m “hunched over” because of the intense pain and on the right hand side of my chest, you can see the port o cath.  I’d lost so much weight that it looks like a bone sticking out of my chest.  This is where they administer medications and where they give me blood transfusions because I have no healthy veins anymore to place an IV.

Throughout the course of the year, I kept losing weight and eventually got to the point where no fluids would even stay down.  It became apparent that I wasn’t going to live.  I was told that I was in the process of starving to death.  That’s when they considered a complete transplant.

I wanted a feeding tube but I still wanted to be able to eat because I LOVE food.  Even during all this I couldn’t let go of my love affair with food.  Alas, they’re not going to give me a feeding tube because it would kill me.  My tissues are brittle and where they’re NOT brittle, the tissues are like gum and pull apart.  I’ve perferated (intestines ruptured and infection spread throughout my body… once again causing me to literally temporarily die) before and they feel like I would again if they even do a simple feeding tube.  My doctors have been in conference with the transplant doctors since January.

Here’s a picture of me after I began to actually GAIN weight.  I was around 110 pounds here (WAY too thin for a woman who’s 5’7).  By the way, I’m about 15 pounds lighter in this picture than I was in the picture with the wheel chair.  Ironically, I’m contemplating how much food I can scarf down.  This was just February.

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So… back to now.  The decision is that I’m NOT a good candidate for a transplant.  The reason is that even if I could live through this major surgery, I’d have to fear rejection.  They’d only be able to do this one time and if I rejected the organs, as happens frequently, I would almost definitely not live through another one to replace the donor organs I rejected.  Remember, my tissues aren’t healthy and there’s nothing good to connect my new organs to.  The only solution now is that if I continue to lose weight, they’ll hospitalize me for a week or maybe even two weeks so that I can receive TPN (nutrition) through my port.  That’s the only thing they can do.

This doesn’t sound like good news, does it?  Well, I know it sounds bleak but I’m relieved they won’t do the transplant.  That just felt like death to me.  Besides that, I’ve gained 10 pounds and am now up to 120 pounds on my own!  The doctors are thrilled that my body, once again, seems to be repairing itself!  God is good to me and miracles DO happen.  I am a walking, living, breathing miracle even by modern medicine’s point of view.  It’s a miracle in itself when a doctor of Western medicine will actually say to me that I am a “medical miracle”!

I am blessed!  I asked the doctors to do what they can to give me another 4 years so that I can finish raising my daughter.  The doctors CAN’T give me 4 years but God CAN and today, I am blessed!  I told the doctor he can expect me to outlive Him.  He says he think I can do it 🙂

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Weekly Photo Challenge: Change

Weekly Photo Challenge:  Change

Life as she knew it changed on the day we welcomed her baby sister into this world!

My poor little niece Esme was used to having ALL the attention to herself and really believed that she was the center of everyone’s heart until the pesky day that her baby sister made her debut! lol Can you see, by the look on her face, that her world is about to change? This was June 4, 2012. The change has not fared well for poor Esme but I believe that there’s hope and she’ll learn to adjust before she turns 18! lol PLEASE God, let there be hope!

This quote really could have been written for Esme’. She follows NOBODY’S rules and has no respect for authority. I guess that can be a good thing if channeled in the right way and TRUST me, we’re ALL working on it. It really does take a village to raise a child in the way she should go and she’s got the love and attention of not only her parents and older sisters, but her extended family. Most especially her old doting Auntie / Godmother Michelle 😉 Maybe she’ll be the next Steve Jobs?

“Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.”
― Apple Inc.