What Are You Thankful For?

After last year’s Thanksgiving disaster, this year we opted to go to our favorite restaurant, Italianissimo, to enjoy a yummy feast.  In addition to the standard Turkey, stuffing and mashed potatoes, we enjoyed Italian appetizers galore ( grilled Portabello mushrooms, baked clams, grilled shrimp, carozza, baby scallops, eggplant rollatine, and stuffed mushrooms), penne and porcini mushrooms in a white sauce (it doesn’t get better than that) and then some of the most delicious desserts.

Yes, I’m thankful for a great meal.  But it pales in comparison to the more important things this Thanksgiving:  family and friends.

I’ve been doing a lot of thinking.  Sometimes I just think too much.  Not with worry..no.  More about how I’ve never doubted for one minute that we would find a way through these difficult times.

Often people ask me how I’m coping and I tell them, “fine.”  Yet they will ask me the same question repeatedly as if they expect me to be terribly depressed or something.  I’m just not.  See, all this hospital and transplant stuff is second nature to me.  I started this journey 15 years ago when my daughter was diagnosed with liver disease at 10 weeks old and was told she’d never live to see her 1st birthday.

And even back then, I never doubted I would find a way.  I’d sneak into the bio-medical library in Philadelphia in the early hours to read the latest liver transplant journals–learning everything I could to make the best decisions.  Sometimes I’d read for hours a day.  I connected with other people–both parents and medical professionals throughout the U.S. and abroad.

I even fought our insurance company to permit us to do a living-donor liver transplant.  My daughter was the first child in the U.S. to be approved through an HMO–not an easy feat.  Although we weren’t able to find a suitable donor back then, we opened the door for all those families who followed us giving them the option if they chose.

For 7 years, I headed a large pediatric liver foundation and volunteered my time to ensuring families received all necessary support and referrals to pediatric liver transplant centers.  Heck, I even got a little girl a free liver transplant and medication.

But then it all came to a screeching halt–in one short year, I attended more funerals of children who died from liver disease and/or transplant than one should in their lifetime.  I just couldn’t do it anymore.  I couldn’t tell another new parent that everything would be ok.  I felt like I was lying to them.  And it was at that point that I closed the door to that chapter of my life.

Those doors have swung back open again and I need to take my daughter through another type of transplant.  Although kidney transplant is new to me, transplant is not.  Yes, I’ve had to learn new things, but none of it do I fear.  I use my head and not my heart as I make these difficult decisions.  And hopefully, my choices will get my daughter through this.

What am I thankful for?  I’m thankful I am ME even if I at times have false courage and unrealistic optimism.  I forge ahead knowing I have the tenacity and determination to see this through.  I am thankful that it’s 15 years later and many medical breakthroughs have occurred since then.  But like I said, I’m most thankful I am surrounded by wonderful family and friends.  Because without people, what would we have to live for?

Oh and I’m thankful we are home from the hospital and I can sneak out at 5am tomorrow morning to catch some of the Black Friday sales–especially at Joann’s Fabrics.  And Best Buy.  And Macy’s.  Etc.

Wishing everyone a blessed Thanksgiving!

P.S. – sorry to the poor photos…someone had messed with my camera settings.

Sew Many Amazing Things Are Happening Here

 

There’s a big sign up at NY Presbyterian Hospital that reads, “Amazing Things Are Happening Here“.  And boy, it is so true!

I have some great news—our transplant coordinators say we clogged the phone lines with requests for donor evaluation forms! They have received an unbelievable amount of kidney donor applications for my daughter from all over the world–Africa, Saudi Arabia and every state in the US!

It ends up friends and friends of friends (as no one is a stranger, but just friends we haven’t met yet) posted about my search for a kidney donor to Marielle on Twitter, Facebook, web sites and blogs–it made the news (special thanks to Courtney on Fox News!)…and now we have more possible donors than we could have ever wished for!  Thank you to EVERYONE who sent in donor forms, called, blogged, twittered and help spread the word…BUT WE DO NOT NEED ANY ADDITIONAL DONORS AT THIS TIME.  I am amazed by the power of the web and the hearts of those who helped make a difference.

But that’s not the best news–although I can’t disclose her name just yet, ONE OF MY E-BAY FRIENDS WAS FOUND TO BE THE PERFECT MATCH!  When I called my friend yesterday to tell her the news, she said it was the BEST Birthday present ever (to hear she was THE ONE on HER Birthday–THE ONE who may save my daughter’s life).  I will give you just one hint:  My dear friend has a serious fabric addiction just like me.  I’ve seen her fabric stash…LOL!

Now, if all goes as planned and my friend makes it through the rest of her kidney donor testing (so far, all the important sensitivity tests are perfect), doctors want to schedule my daughter’s kidney transplant for the day after Christmas (my deceased Grandma’s birthday)!  Doctors need to get Marielle in the best possible health before the transplant (she’s lost 1/10th her body weight and can’t walk more than a few steps).  I can’t wait to let you know the full story–and how this is truly so special and meant to be.  So stay tuned!

Although we brought Marielle home from NY Presbyterian Hospital last night, she is currently hooked-up to a dialysis machine for 4 hours at our local hospital as an outpatient.  She continues to struggle with severe pain and high blood pressure.  Yet, she is just happy to be home with her loved ones for Thanksgiving…even if it includes dozens of medications around the clock, dialysis and constant blood pressure monitoring.

To say we are blessed is an understatement. Please continue to say a little extra prayer that all goes according to plan.  And yes, it will be a wonderful Thanksgiving at my house this year!  May your home feel the love of the holiday season and be reminded how much we all have to be thankful for.  Happy Thanksgiving!

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

Sew Hoping for a Miracle

PLEASE SEE MOST RECENT UPDATE:

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

On Thursday night, we had to call an ambulance to get Marielle to the local emergency room as her condition was deteriorating quickly.

Marielle’s kidney blood numbers were climbing fast.  Her creatinine was 10 (normal creatinine is 0.5 to 1.1), and her BUN  was 119 (normal BUN is 8-20).  Surgeons where called to place a tunneled catheter in her chest and start emergency dialysis.

After her 2nd dialysis treatment on Saturday, she got some color back in her face.  She passed the time by reading a book on my Kindle book reader.

However, she was just too weak to finish more than a chapter of George Orwell’s 1984.  She easily fell asleep for the rest of her dialysis treatment.

Although we were able to get her kidney numbers down a bit, her blood pressure (178/107) continues to be a major problem.  This morning her blood pressure is even higher and they’ve started rescue blood pressure medicine to try to lower it.

Marielle will be hospitalized here in Staten Island until Monday night and then have her kidney transplant evaluation at NY Presbyterian-Columbia University on Tuesday morning if we can stabilize her.  She will get to come home between Monday night and Tuesday morning.  Not sure what will happen after that.  If we can stabilize her, she’s be able to get outpatient dialysis until we can find her a kidney donor.

If you are interested in being tested to see if you are a possible match for a living kidney donor, you can find more information on my previous blog post.  I can’t tell you how grateful I am for all the outpouring of support and prayers.  I wish I could reply to each and every email, but my time on the computer is very limited.  Please know I read each post and email and am touched by all the love from friends and strangers.

I will update everyone as soon as I can.

Sew Urgent – Help Save My Daughter’s Life

PLEASE SEE MOST RECENT UPDATE:

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

Things continue to be difficult.  But where there is life, there is hope. 

I’m forcing myself to blog so I can update all my dear friends and family about what is going on with my sweet Sunshine Girl, Marielle, as her kidneys fail.  It looks like we are on the way to the local emergency room again tonight–she’s in terrible pain and a bit lethargic.

After continued difficultly getting calls returned and kidney donor evaluation packages send to those who have come forward to donate their kidneys, we’ve given up on the Philadelphia hospital of ever finding a living kidney donor.  They’ve recently told us they will only test family members and the closest of friends.  They’ve taken it upon themselves to decide who our friends are.  Philadelphia has only tested 3 donors in 4 months.  To say I am furious is an understatement.

But there is hope.  We are in the process of transferring Marielle’s care to NY Presbyterian-Columbia University Hospital (NYP) in hopes their additional living-donor kidney programs will save her life.  Not only will NYP consider family members as donors, but are willing to evaluate EVERYONE (friends, associates and kind strangers) who wants to donate a kidney.  That’s right…EVERYONE regardless of blood type, antibody mismatch, age, etc.  They offer several kidney donor options for us:

Compatible Living Donor

Incompatible Donor Program

Paired Donor Exchange Program

Deceased Donor Program

Marielle will only match 1 in 50 people in the general population (average person matches 1 in 2). I  am asking EVERYONE who has ever loved a child as deeply as I do my daughter to please consider being a living-kidney donor to her. You might be the one who can save my daughter’s life.

If you would like to receive a donor consent form to see if you could be a potential donor, please print out this form:

kidneydonorquestionnaire

Then send it to Joan Kelly either by email at kellyja@nyp.org or fax (212) 305-9642.  Be sure to put MARIELLE CARROCCIO as the Potential Recipient’s Name.

Please pass this information along to anyone and everyone.

I continue to be comforted by the tremendous amount of love and support from all of you.  Thank you seems to fall short.