I Get By With a Little Help from My Friends and Followers

PLEASE SEE MOST RECENT UPDATE:

>>>>>>>>CLICK HERE<<<<<<<<<<

Marielle is still hospitalized up at NY Presbyterian-Columbia Hospital. Although dialysis has helped bring her kidney numbers under control, we are still struggling with dangerously high blood pressure. And my worst fear about dialysis has happened—her catheter is infected…but only at the catheter exit site so far. Docs are working hard to get the infection under control, so they won’t have to remove the catheter in her chest and implant another.

Computer access up here STINKS! We’ve tried everything to get our laptop to work in her hospital room, but techs say the room doesn’t have a good wireless signal. Luckily I’ve found a computer in one of the parent lounges, so I can now check my email and blog.

Our new transplant coordinator (oh my, I adore this lady) has gotten a TON of donor evaluation consent forms…more than I could have ever wished for. I believe the hospital is only permitted to send out 12 blood vial kits to possible kidney donors each week (something about our private health insurance limits). So please hang in there with me while we sort through all the donor forms.

There’s been many comments on my blog that need answers. So here goes:

  • Marielle is an A blood type. It doesn’t matter what blood type as they have the ability to do a mismatch.
  • Marielle is on hemodialysis as she cannot have peritoneal dialysis (through her abdomen) due to her prior liver transplant.
  • Although dialysis will prolong Marielle’s kidney function, it has not been able to control her blood pressure. And the more blood pressure issues, the more heart damage.
  • Marielle is having terrible pain due to bowel problems. Docs have tried a half a dozen laxatives, fibers, etc.—nothing seems to be working to stop the ongoing pain.

I am waiting to hear back from our transplant coordinator. Apparently she “might” have found a good donor for Marielle. She said it looks good on paper, but it would need to be run through their computer to determine if the donor would match. However, the hospital will continue to search for a better match in the meantime. The better the match, the more successful the transplanted kidney function.

I once again want to thank EVERYONE. I cannot believe how everyone has rallied around me and my Sunshine Girl. You all give me strength to face each day. Seriously. I hope to have good news soon. Thanks for coming along on this journey with us.

With friendship,

Lisa

Comments

  1. Lisa, my heart is with you, I am beyond thrilled to see how this new hosptial is helping you, what a relief I know that has got to be for you – thank you for sharing your walk with us. I am praying for Marielle (and your family) both for the transplant, blood pressure and to ease her pain.

    Deb

  2. What an incredible journey this has been for you and your Sunshine Girl! I am daily sending up prayers for you and have others praying for you all as well. I am SO happy to hear that the new hospital is finally delivering some help. Continued prayers heading your way!

    ~Cristy

  3. Lisa- it’s Courtney Friel- reporter at Fox News Channel. I am going to do a quick story on your blog and Marielle today during the 11am ET hour of our show “Happening Now”. I hope it can send more people your way and my prayers are with you guys- good luck! Thanks

  4. Lisa, I’m glad that this new hospital seems to be concerned about helping you and Marielle find that new kidney. Bless your heart, I can’t even begin to imagine what you must be going through right now. I think about you every day and check here several times a day, just hoping that there will be good news and that a new kidney has been found.

    Hugs to you and your whole family.

  5. It sounds like there are some positives to help balance out the negatives on her status right now. I hope you can focus on those more than the negatives to keep your spirits up. Extra prayers for her doctors right now!

  6. Lisa,
    Thanks for the update, we continue to pray and send our good thoughts your way. You and Marielle are in my thoughts often.

    Hugs,
    Amy

  7. i just saw your plea on fox news – i will put this on both my blogs. go with God.

  8. Hey, I just saw your story on Foxnews. I am a 21 year old male. I do not know my blood type or anything like that, but I would be willing to do anything that I can to help you and your family out.

  9. thank you for the update. i think about you and marielle often.

  10. Thanks for the update. I hope that I get my blood test information soon🙂

  11. Glad there is some progress; I will continue to link your updates to twitter and hopefully, a donor will be connected with your daughter.
    I am a mom too and know some of what you are feeling.

  12. We’re here for you. Keep your head up. @Kevin You rock, bro.

  13. We’re doing our best to talk about you and Marielle.

    Fox is so wonderful, I’m glad they picked up your story.

  14. I check in every day to see if there is any news and I am very happy to see that the new hospital is working with you and Marielle. My thoughts and prayers are with you both. The internet just brings the world together doesn’t it, let Marielle know we are thinking of her in Oman!

  15. Hi, I read your blog and would love to help. However I don’t know what your email address is or where to find it…
    I’m living in California, not sure if that helps or hinders. Anyways please contact me at californiakid2@gmail.com if I can help. God bless, praying for your family.

  16. Hey Lisa, we’re still praying here and keeping Marielle on all our church and group lists!
    Hang in there, I KNOW you will get your miracle soon!

  17. Hi Lisa, I’m thrilled the hospital is working with you so diligently. Our thoughts and prayers are with you, Marielle and your whole family.

  18. You and your family are in my prayers. I found your blog through some contacts on Twitter.com. I sent in the form even though the chances of me being a donor is remote. (live in Hawaii – blood type O negative) This experience has sparked a great discussion with my 17 year old son. He is prayer for all of you as well. Once Marielle recovers please consider visiting the islands. We’ll treat you to dinner on the beach!

    Aloha,

  19. Lisa, not a day passes that I don’t think of the two of you and hope that I hear those magic words. You are in my heart, sweetie.

  20. NY presbyterian rocks – both of them – the one on 70th, and the one on 168th.

    Sending a “Refuah Shlemah,” (healing prayer) and strength. From one mom to another.

  21. Hey, just to say I am new here. Just saw your tweets on twtiscoop. It makes me a little teary to read these posts and I wish you and the family all the best in these difficult times.

    Regards from England🙂

  22. I woke up this morning thinking about you and your daughter. I had to log on to find out how she is….Please post about what other kinds of things could be done to help you while you wait out the search for a donor….Im sure that others, like me, would like to do something to help. I wish you strength and I wish Marielle a new kidney! When I look at her picture, my heart breaks to think of what she (and you) are going through. She could easily be a friend of my 15 year old son…..from one mom to another….I send you support and compassion…..

  23. I am praying that all goes well and that the potential donor is the right one. Just know that all your friends and followers are thinking of you and thinking positive thoughts.

  24. I learned about your daughter through Twitter and submitted the donor form right away. Thoughts are with you and your family.

  25. I hope that means you found a donor…. She’s been in our prayers!

  26. We’re all out here, praying and spreading the word for her. I know it’s hard, but hang in there. Sending your Sunshine Girl warm, healing thoughts…

  27. Wow. I’ve just started following your daughter’s journey. She and you are in our families prayers! You have such a beautiful daughter! Please keep us updated! And let us know if she needs anything to keep her hopes hope or to just brighten her day! It’s the holidays, I would love to help you out in any way that I can. ***BIG HUGS***

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