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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37 thoughts on “Transplant news… the final decision…

  1. You are so strong to be sharing your story like this! As much as the human body can suffer from unexplained disease, it can also inexplicably heal itself. Don’t give up hope! Your attitude is an inspiration!

  2. Oh sweetie, thank you! I wasn’t built to ever quit. I’d have been dead so long ago if I were a quitter. It really DOES amaze me how much the human body can heal itself though! I don’t guess I ever realized this before I started going through all this crap. (((hugs)))

  3. I admire you and your bravery and your positive attitude so much. You remind me of Kathryn in that way. We could all take a leaf out of your book! I am sending you postive thoughts and love and I’m sure, that with all the support and love you have around you that you are right and you will outlive that doctor after all. Keep up the positive belief x

    • Awww. I’m honored that you think I remind you of Katheryn in some ways. I definitely can relate to her in MANY ways. I only hope I handle this with as much grace. Thank you so much for that. And you’re right, I have a lot to live for too and a lot of love. My family gets tired though.

  4. I really admire your strength and determination! What a strong willed woman you are. It’s women like you that helped make things equal between the sexes; the women that stood up for what was right and didn’t ever want to quit. I really hope you continue to keep that smile upon your face and you wear you family out with your positivity and lust for life 😉 Best wishes for good health xxxx

    • Wow! I’m SO honored by your words. I’ve always been a strong advocate for women’s rights though so it’s strange you would compare me to those women. I would have probably been a fighter during the days of extreme inequality. I have a SUPER loud mouth and a mean fighting spirit. lol

      Seriously, thank you so much for that. Maybe you don’t really know but it’s support like this that has kept me going and strong. (((hugs)))

      • At the end of the day your bravery and determination shines through on your posts; you can see where you are trying to make light heart of things and were you are trying to be modest. But i’m pretty sure most women would be able to see through your writing. You sound like a lovely person and you have been trying to keep up with a blog; that’s the last of your worries; I can imagine you must be rather frightened at times I do hope you’re okay and all your real friends and family are there for you. But thank you for sharing your story with all of us it’s very inspiring 🙂

      • Wow. Thank you. I guess I don’t try to be modest. If you knew me in real life, you’d know this is just how I am. Besides, I’m so used to chaos that this just seems like another thing to me. I grew up that way and I guess it really hasn’t changed as far as the craziness of life goes. I’ve defied death so many times that maybe I seem kind of detached and unrealistic. I’ve been indestructible so I feel indestructible, if that makes sense. Almost like the twilight zone. lol

        But yes, I have SO many friends and much family who love and care for me. They get tired, I know they do. Who wouldn’t? This has been going on since 2005. I blog to talk about stuff that I can’t really talk to them about. I can’t keep adding more burden on them. Oh and I blog to leave part of me behind in case that day really DOES come. I guess I’m realistic enough to know that it WILL come eventually.

        Your words mean so much to me and I humbly thank you from the bottom of my heart.

  5. Dearest Michelle, You’re an extraordinary person in every way possible. And yes, you absolutely DO have the faith and power to manifest the life you wish. I’m sending you lots and lots of happy thoughts and keeping you in my Leo heart . . . XOXOXOXOXOXOXO
    P.S. I actually stopped thinking about myself for a couple of seconds reading your post!
    Must be because I look at you and see everything that is good in this world : ) Much love, Jude

    • OMG! What a way to start my day with your beautiful comment! Yeah, you’ve got me all teary eyed BUT I have such a warm, fuzzy feeling and today’s going to be a very GOOD day now, thanks to you, my friend! (((HUGS)))

      Don’t think I don’t understand what it means for a Leo to stop thinking of themselves for a moment! ROFLMAO!!! I’m an Aries and I know a Leo even beats MY self centered personality. I guess all fire signs are that way, really. BUT, the world would be a VERY boring place without the presence of all of us fire signs 😉 My brother is a Leo and guess what the topic of our conversations are? HIM! lol Always HIM. He’s a strong persona though and for some reason, even through our aggrivation with his self centeredness, he’s still the life of our party! lol

      You seriously just put the biggest smile on my face and thank you!

  6. You are such a strong woman!!! You are in my thoughts and prayers and I pray that you have another 40 years!!! God can do it if its his will and I pray that it is!!! xx

    • Awe! Thank you so much! You just made me smile… Although I’m not sure I could handle another 40 years of this! lol BUT, you hit the nail on the head when you said “if it’s HIS will”. All of this, I try to use to glorify Him. Hope I’m succeeding just a little bit 🙂

  7. Such an incredible journey you’ve traveled – it’s absolutely awe-inspiring. You’re a very strong woman, not to mention one hell of a cook with an awesome sense of humor, so I’m pretty sure you’ll be sticking around for a long, long time. 🙂 Blessings and prayers!

    • Awww! THANK you! If I didn’t have a sense of humor, there’s NO way I could go through this. You have to laugh at life right in it’s face sometimes. lol It helps, it really does.

      (((hugs)))

    • HAHA! Thanks Lindz! You’ve seen this thing from the start.. It’s SUCH a boring subject but it IS my life. Thank you my friend. I’ve already kicked it’s ass for WAY longer than they thought I could! lol This proving that nobody knows what God’s plan is 😉

  8. Each breath is a gift , each moment is a blessing, our love last forever and the manner we carry our cross defines us. My prayers will include you and your family. I pray that you will have continue health improvements and Love will surround you and help you every minute . God be with you

    • Those are such beautiful words and sentiments! You just have a way of touching everyone’s heart with your writing. But thank you my friend. each breath IS a blessing! That is FOR sure. I am a blessed woman!

  9. Today I am sending you love, happiness and hope. You are a winner, you have proven that positive outlook and the fire that burns within us rejuvenates us and with prayers we are then a miracle to onlookers. I am sending you all the positives and smiles that could ever be generated in this world! Embrace them, keep strong and NEVER GIVE UP 🙂 🙂 Hugs

  10. You are one brave woman for having gone through so much! I hope that you continue to be a miracle on this planet for decades to come because miracles are very rare to hear. Keep your head up !! 🙂

    • Awww THANK you! Some days I don’t FEEL like a miracle… yesterday was sure one of them. Wow and OUCH… it was a painful day and I spent most of it in bed. BUT, that being said, the miracle is that I’m around at all to even HAVE a painful day and most days aren’t THAT painful.

      How are YOU? Hopefully everything has settled down?

      • awe I’d still classify you as a miracle. I’m doing good, we just celebrated my daughters 5th birthday on Sunday and I’m realizing how fast she is growing up. things are starting to settle down slowly. 😃

      • Well happy birthday to the little one! That’s a special thing 🙂 I wish mine were still 5! My youngest turns 15 in a few weeks 😦

        You’ve sure been through the wringer with all your family has been through, I know. I hope you begin to see the brighter skies for good. You’ve been still in my prayers.

      • That is super super sweet of you to say! Thank you for having us in your prayers, we do appreciate it. Wow, 15 years old..I can’t even begin to imagine that honestly. Seems like you blink your eye and they are driving.

        I think brighter skies are in the future for us we just gotta be patient 🙂

      • Just know that even during these really dark days, you’re learning. Yeah, the learning SUCKS, big time. You’re learning and more importantly, you’re growing as a family. It’s necessary and besides that, nobody ever promised us a rose garden, right? That’ what I have to keep telling myself, anyway. lol But you have a very good attitude and I know you’ll get through this.

        Yeah, 15 is CRAZY. I’ve been through this before cause my oldest is 28. BUT, my baby seems to have just been born yesterday. I look at her and can still see that chubby little 1 year old. Sometimes, I actually have to look twice because I don’t recognize the beautiful lady she’s becoming. It’s sad but it’s life and I AM so proud of her. She’s definitely a better human being than I am so I guess I did something right 🙂

  11. You’re so brave. I’m adding you to my prayer list. Your kids need you and you ARE going to be there for them.

    • Oh thank you so much for adding me to your prayer list. I ALWAYS say that without prayer, I wouldn’t be here. I TRULY believe God is using me to demonstrate the power of prayer. I wish I had time to tell you all the stories about the prayer lists I’ve been on and the times I’ve truly died. There really is just NO medical reason I should be here and my doctors aren’t shy about telling me those exact words! I am very thankful for your prayers and kindness!

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