Monday, April 9, 2012

H is for Heart Transplant: What a different three years can make...

This was Bean three years ago this month.  Its tough to look at that picture.  At that point, Easter 2009, we were still in the hospital in Sacramento and they weren't quite sure what was going on - just that her heart was five times the size it should be and she was not responding well to the IV meds they had her put her on.  We spent that Easter in that hospital room.  I still have a coffee cup and stuffed bunny they brought around for all the parents and kids in the ICU.  That week was probably one of the hardest of my life.  Everything was so unclear and it just didn't seem like anyone could tell us exactly what to expect.

This was Bean yesterday - Easter 2012.  What a difference three years and a heart transplant makes! Bean got her new heart about three months after the above picture was taken.  We are forever thankful for the family that saw past their own grief to donate their babies heart to our baby.  We have not heard back from the donor family and we may never hear back from them, but hopefully they took some solace in knowing that they saved a life...perhaps many lives (if the other organs found homes in other babies).

But, I thought some of you might be interested in our learning more about heart transplants.  So, that is the subject of the rest of this post.

A heart transplant is an open heart surgery where a diseased heart is removed and a healthy heart from a donor is sewn into place.  Heart transplantation is only about 50 years old, with the first one being performed in 1967.  The process has come a long way since then, and according to Wikipedia about 3500 heart transplants are performed annually worldwide in 2007.  Infant heart transplants are more rare and more recent.  According to the Loma Linda University website, where the first infant transplant was performed, the first infant heart transplant of a human heart was in 1985.  According to Medscape Reference 350-400 pediatric heart transplants (in children 18 or younger) are performed annually, so only about 10% of the total heart transplants done each year are in children under 18, let alone infants.  Because of the relative recency of heart transplantation in infants, the statistics on survival, complications, etc. is limited.  But, the survival rates for younger recipients seem to be better than older recipients, which maybe a reflection of their ability to adjust their immune response system better.

Bean received her heart at Lucille Packard Children's Hospital and according to their heart transplant page they lead the nation in survival rates for one- and five-year outcomes and they have the largest group of child recipients who have survived longer than 25 years with a heart transplant!  Pretty good statistics.

Bean is currently on a drug regimen that requires us to administer a number of medications every morning and every evening.  She started out post-transplant on about 13 medications, but has been weaned off of all but five of them!  She will probably be on these five for the rest of her life.  She takes two immuno-suppressants, one blood pressure medicine, one anti-statin (lipitor) and fluoride because our water does not have fluoride in it.  All of them other than fluoride are liquid and are taken with a syringe - we draw up a measured amount and she takes it in her mouth.  The fluoride is a chewable.  She will, at some point, be able to switch over to pills, but for now, it is liquid and she has adjusted to taking them just fine.  Other than that, we have to get blood draws done to check her immuno-suppressant levels every once in a while.  We have to drive about 4 hours to get to Stanford for clinic appointments and biopsies to check for rejection about every three to six weeks.  Overall, her life is not that much different than any other three year old.  But, she is at risk of getting sick easier and staying sick longer, she obviously has ongoing medical appointments that others would not have to deal with and she suffers from some side effects of her medicine like diarrhea and stomach issues.

Overall, I can not think of a better outcome than we've had, considering how very sick she was as a baby.  I am so thankful that heart transplants have become as successful as they have for infant recipients and I'm thankful she was able to get a heart when she most needed one.  And we will continue to do our best to be one of the positive statistical results of heart transplantation!

Saturday, April 7, 2012

G is for Gorgeous Day! (and Gigantic bubbles)

Today is an Instagram day.  I've just discovered it and I am absolutely loving it.  It was a beautiful day in our hometown today.  The sun was out, but it wasn't too hot.  It wasn't too windy.  And we enjoyed some outdoor fun.  This morning we went for a walk and found that someone's sprinkler system was malfunctioning and had created the best puddle.  So, we came home, donned the rain boots and went back for some splashing.  Even Bella, our dog, got in on the fun!

Later in the afternoon/evening, we got out one of Gigi and Papa's Easter gifts - a giant bubble making wand! It worked really, really well and we all had a lot of fun making gigantic bubbles in our front yard.  It took Bean a few tries, but she finally got the technique (lay the wand completely flat and then pick it up very slowly) and she got some HUGE bubbles on her own:

This evening, we decorated some eggs.  I used the idea from Wildink Press to bake the eggs in the oven rather than boil them and it was so easy!  I mixed up some vinegar, water and food coloring and then we decorated them with colored markers and glitter glue pens.  They aren't exactly museum-quality pieces, but Bean had a blast!

That's it for this gorgeous day!  We enjoyed all parts of it and are looking forward to fun visit to Grandma and Grandpa's house tomorrow and maybe even a visit from the Easter Bunny tonight (although the basket has yet to be built...better be getting on that soon...its getting late!).

Wishing you all a very Happy Easter and a great week ahead!

Friday, April 6, 2012

"Egg"cellent Easter Egg Hunt and Family Fun

Well, I've missed a few letters/days in the A to Z adventure, so I'm just jumping right in with "E" (yesterday's letter) and "F" (today's letter).  Not exactly what the monthly meme was designed to do, but I will have to go with it.

My local Chico Mothers Club had an egg hunt this week and we had great fun.  This was the first large character that Bean has been willing to actually touch and sit on their lap!  Usually she is really excited to see them until she gets up close and then she gets scared.  But, she climbed right up for the picture, although as you can probably see from the picture, she was not exactly confident in her decision.  She had fun with the Easter Bunny, but really liked the pre-bunny activities - playing in the park:

and of course, the egg hunt (not a challenging one because there were only 4 and younger there, but they had a blast):

The day was particularly special because Bean's "Gigi" and "Papa" were here for a visit!  So, we all got some special Family Fun time Easter-style.  The day was gorgeous.  The river was running fast after all the rain, but the sky was nearly cloudless for the egg hunt:

She spent time with Papa and Daddy...

And some with Gigi...

And some time by herself just enjoying the great outdoors...

All in all, it was a great day, especially after the last few weeks of illnesses, doctor and hospital visits, bad weather and just plain miserableness!  We were also able to enjoy the first of our Thursday Night Markets here in Chico.  We will celebrate Easter at her other Grandma and Grandpa's on Sunday with her favorite Aunt and hopefully her cousins.

I'm really happy to have had this time as her Dad is leaving again on Wednesday for work and then when he comes back we will be straight into the tonsillectomy/adenoidectomy, which will obviously have some recovery time (and a night in the hospital again) and some anxiety for all of us.  But, if it helps her sleeping become more consistent and restful (and possibly even give her a better appetite) and keeps all the ear infections at bay, it will be more than worth all of the hassle!  Fingers crossed.

For now, I leave you with the Bean readying herself for her day out...I think the smile says it all!

Hope you have a very Happy Easter or Passover or just a great weekend!  

Sunday, April 1, 2012

A is for Allomap Molecular Expression Testing

I have decided to participate in the Blogging from A to Z Challenge and since I have recently realized how much I DON'T know about heart function, heart diagnostics, etc. I have decided to use a theme of heart disease and  make it to treatment.  I will try not to boring and dry, and hopefully someone reading will find it somewhat helpful.

With our recent problems in the areas of biopsies  and the fact that she has only one access point for biopsies (as opposed to four), I've had a lot of people asking me about alternatives to biopsy.  One such alternative is the recent AlloMap Molecular Expression Testing - or the blood test for rejection.  Bean is not eligible for this alternative - one has to be at least 15 years of age.  So, she has a long ways to go.  But, I thought for those curious about this, I would share the facts as I know them.

Approved by the FDA in 2008, the test is designed to provide an alternative to invasive endomyocardial biopsy (what Bean gets) for those patients who are stable and asymptomatic.  The test only predicts probability of moderate/severe acute cellular rejection.  This is only one type of rejection.  The others are antibody-mediated rejection (AMR) and cardiac allograft vasculopathy (CAV).  The test can be used in conjunction with other clinical assessments (echocardiograms, EKGs and examinations) to judge whether an invasive biopsy is needed (negative numbers would be followed by a biopsy for more exact information).

The preliminary results of clinical comparisons between the AlloMap and biopsies is pretty impressive.  Over a four year period, from 2005 to 2009, the test was used on 602 patients in 13 transplant centers and results showed there was no inferior results when compared to biopsy for clinical outcome.  Now, all that technical language simply means that those having regular biopsies were no more likely to suffer acute rejection than those receiving the AlloMap instead.  Which is good news, but doesn't mean that this test does away with biopsies (because the way a patient is found to be stable and asymptomatic is through routine biopsies following the transplant - all the test subjects were at least six months post-transplant).  But, it will save individuals a lot of invasive procedures if they are doing well clinically and have no signs of rejection or other problems with the heart.

I would assume (although I don't know for sure) that there would still be a need for annual biopsies because it is during these that they test the elasticity of the arteries and other issues that are known to cause issues for recipients.  But, only having to have biopsies once a year instead of three times a year would be a very welcome change for us right now.  But, again, we aren't even in the running for this choice.  And I don't know if Bean's history of rejection (two 3s in the first year and a number of 1As post-transplant) would disqualify her as a candidate or not.  But, I guess I don't have to worry about that for at least 12 years.  I have spoken to a few people who are using this technique.  Some of them love it.  Some of them feel a little trepidation at trusting the results as much as they would a biopsy's result.

Anything that provides transplant recipients and their doctors more choices in treatment and evaluation seems like a welcome thing to me.  So, I hope that AlloMap continues to be successful and improve and maybe even gets approved for younger recipients so kids under 15 do not have to suffer so many of these invasive procedures!

So, that's today's A topic - AlloMap Molecular Expression Testing.  The information presented here came from the product's website and/or the wikipedia page for the product.

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...