Friday, August 28, 2009

Antibody Test and Pre-transplant Consultation

We had a very long day up at Primary's yesterday! Sweet little Mason was so exhausted he fell asleep in his high chair at dinner time when we got back home.

I'll start with the good news first......which is the kind of news I needed at this point in our journey with Miracle Mason. The results of his antibody test (or PRA- panel reactive antibodies) were great! His class I antibodies (these are the strongest type of antibodies which would cause his body to reject a new heart) came back at 0% !!! His class II antibodies came back at 98%, (being the very weak antibodies) and I was told the class II don't matter much. (I 'm not too clear on the class II, but when Dr. Everett said this is good news I'll believe her.) They will test his PRA levels every two weeks, because they can change. We will hope and pray they stay in the "good news" range!

With these antibody levels Mason can receive a heart transplant at Primary"s! Yay! Otherwise we'd have to take him else where, like to Stanford where they do extensive treatments to lower antibodies, and be away from our family. We are so happy about this!

On to the all day consultation and evaluation.....this isn't necessarily the bad news, it was just a lot of information to take in and swallow!! The truth of how tremendously expensive this transplant will be does create just a bit of financial worry!! But, how can you put a price tag on the value of out Mason's life?? That's why I say this isn't the bad news, just the reality. Just the heart transplant procedure alone will cost $300,000! And that does not include the hospital stay before and after, the surgeon's bill, the anesthesiologist's bill, or the pharmacy's bill! So the total could be between 1 and 2 million

Another topic presented was all the medication he will be on post-transplant. He will be on about 12 to 15 meds for the first 6 months and slowly wean off of several of them. The main 2 immunosuppresants he will be on for life. And for the first 6 months he can have very little contact outside of our home (or the hospital) because he will basically have no working immune system to fight of illnesses. All the immumosuppresants are to hopefully prevent rejection of his new heart. Talk about 24-7 care! Wait, more than he already is right now? Wow! Here's the other catch in our insurance...they don't offer the best pharmacy benefits (and pharmacy is not included in our yearly out of pocket either). So, even with insurance our out of pockets costs on all his medicines will be $1,600 - $ 1,800 A MONTH! ( And that's on top of our $800 monthly premium.) Did I already mention a fundraiser?!

My other concern is the wait. The average wait is 3-6 months once on the list, but in all reality it can be anywhere from 1 day to 1 year or more (if his little heart doesn't fail before.....I try not to think about that!) I also asked Dr. Everett what is the possibility of Mason waiting at home until a heart which matches is blood type and weight becomes available for him? She said it is possible, but she has never seen a child as young as him not get so sick while waiting for a heart that he has to be admitted to the hospital and be on IV heart meds until his heart comes! Ok, I hope Mason has another miracle waiting for him, because waiting for months in the hospital would be so tough on our family. For the week long stays we've had this year he would never let me out of his sight! And a week was hard enough on my other kiddos and Dad at home, but what about MONTHS?!

What's next? Mason will have his pre-transplant heart cath next Thursday Sept 3. This is a very invasive procedure which definitely concerns me , but it has to be done before he is listed for a heart. The last time he had one pre-Glenn (his 2nd surgery) he didn't recover very well and he ended up spending the night in the PICU, but normally you go home the same day. We will pray for a better recovery this time.

Usually after the cath , like the following week, Dr. Everett presents the child's case at two different meetings for full medical approval of listing him for a heart. The first is with the Utah Board of Heart Transplants (for adults and pediatrics) which includes all transplant Dr.'s, social workers, financial social workers, pharmacists etc. Then the 2nd is the "care conference" which includes the entire cardiothoracic team and cardiology team. One very important person at the care conference who needs to approve Mason's need for a transplant as well as agreeing that he is a good candidate is Dr. Kouretas, the heart surgeon who performed his other 2 open heart surgery. Because Dr. Everett will be out of town the entire following week she will present Mason's case this coming Tuesday and Wednesday right before his heart cath on Thursday. She is doing this in case the decision is made to list him right after his cath!

This means Mason could be LISTED for a NEW HEART as soon as THURSDAY or FRIDAY!!! This seems so unbelievable and amazingly surreal!

I've probably left out some information, but I think I covered most of the important details. My my mind is overloaded and tired. My heart is over flowing with emotions. My body feels like I'm in the middle of running an ultra-marathon. But most of all I am still at peace with making this step forward with our Miracle Mason! We are excited about the new and more fulfilling life a new heart can bring our sweet boy! Please pray with us that his medical teams will be inspired about what is best for Mason, that he will recover well from his heart cath, that Mason's heart will hold out while waiting (and even waiting at home would be optimal!!!), that our other children will feel loved and at peace during this trial, that his antibodies don't strengthen, and also that he will remain healthy, well... as healthy as a kiddo with only half of a heart and in failure can be (if he gets a fever, cough, runny nose, etc,,he will be taken off the list until better). Oh, and one more thing he needs to gain more weight!!!! (not to be listed but make him stronger)

Thank you, thank you for your prayerful help, your love and support, and all your care and concern. Together we can help our Miracle Mason continue to fight for his life!!

p.s. Mason weighed 17 lbs 8 oz on Thursday. That's a whole pound and a half since July 10th!

p.p.s.s. We along with some friends do have a couple fundraiser up our sleeves so we will keep you posted. Also at the top of the right column on this blog there is a donate button....ever penny will go towards Mason's medical even a few dollars will help. Thank you!!!s! We do have insurance which will pay 100% AFTER our $3,500 medical max out of pocket (per person in the family) per year is met. But there are 2 catches in our insurance policy.... 1)Mason has a 2.2 million $ life time cap and since he was born his bills have already reached almost 1.2 million


The Simmons Family said...

Hey Summer.. WoW!! I am so excited that his antibodies are 0% and that they can list him soon. Geez, the financial burden, I have no advice there. Have you applied for SSI? If he qualified, he would absolutely qualify for medicaid which would HELP a ton! Also.. check into your state services. In Arizona, we have DDD (Department of Developmental Disabilities) which Owen was just approved for. With that, he also qualified for ALTCS (Arizona Long Term Care) which is a secondary insurance. NO copays, NO worries.

Ask the hospital social worker for info on what they may have in Utah that might just help with expenses.

We're praying for you all!!!!

Derick said...

Hey, Summer, it is actually Julia not Derick. I want you to know that we are praying so hard for you and your sweet little boy and your family! We will keep praying for miracles to come your way. I'm so amazed at this journey. Keep the faith!

Cassie and Chad said...

Wow what a whirl wind of emotions! Please if I can help with fundraisers or anything else please let me know. I could donate vinyl lettering or other things...Please let me know!

The G Fam said...

Wow you guys! This is crazy and intense, and really a lot to take in. I am sorry about the cap thing. Ever though of having Mark work for IHC? No cap, and the max out of pocket is 2,500 per person per year. I remember people complaining to me about intermoutain insurance and I told them that they would never get a bad word about the insurance from me because there are some families who have life-max out of pockets, and how small the amount we had to pay for Ryker's bills versus what they charged the insurance. I am so you have to worry about that too, on top of everything else. We are there for you guys (as we always have) and just know that we will help with any fund-raising efforts (if you have a button made up to link where they can donate, I will post one on my blog and I can ask a few friends to help out too!) Hang in there, and know we are praying along with so many others.
Heart hugs,
Emily and Mike

The G Fam said...

*so sorry

Deb said...

Praying for your family, your children, your strength and your darling baby boy.


Robin said...

Okay Summer, what you're going through makes an ultra marathon look like cake. I about had it with my measly 3 1/2 weeks in the UVRMC NICU. I can't imagine any more time than that and any more kids at home but my one. We're praying for you, Mason, and your family.

The Simmons Family said...

We'll be thinking about you tomorrow as Mason has his pre-transplant cath!

Ryan and Hilary said...

Hi Summer, My name is Hilary Cook my son Daxton had a heart transplant last Sept and is doing amazingly well. He is going in for his one year heart cath on Thursday. I was hoping that we could say hello. We will keep Mason in our prayers. You can come visit my blog at
good luck and hope to see you on Thursday. Hilary Cook

Kyle and Alli said...

Hi Summer! Go meet Hilary and cute Mr. Daxton...they are awesome transplant heart buddies to have! Sounds like you have a lot going on. Hopefully Andrea's advice will help out with the financial junk a little bit... I hate that part of it. Remember too that PCMC is a charity hospital, so they will waive, reduce, and do a lot to help out, you just need to bring it up with billing and be persistent. Love to you guys! (and we are sad that we can a day too early to chat while Mason is in the cath lab. We are here today for Grant's post op...we always seem to miss you by a day!)