Wednesday, November 18, 2009

October 15, 2009.. Meeting the Transplant Team

(Only a couple more entries and then this blog will be up to date..yeah!)

I still find myself stunned and in shock that our family is going through this. For real? I couldn't believe that I was about to meet with the Heart Transplant team at Primary Children' s Hospital. Was I really there for my own daughter?

Mark and I prepared ourselves both spiritually and mentally. We knew we needed to be strong and make it through this appointment. This was 'The Talk' and we were first reminded by Dr. Everitt that a discussion or appointment such as this one only occurs when there are no other options available. We had no idea just how educated on Heart Transplants we would become. We had our list of questions with us, but we didn't have to ask any of them. They were all addressed and in a lot more detail than I imagined.

Our appointment began at about 11:00am and continued for the entire day. Yes, the entire day. Mark and I walked out of the clinic room at 6:00pm. The clinic was closed. We had just spent all day in the Cardiology Clinic. Our appointments consisted of first meeting with the Financial / Insurance Rep., Social Worker, Pharmacist, Surgeon, Transplant Coordinators, and finally Dr. Everitt. Each person spent 45 min. to 2 hours with us. We were completely exhausted by the end. Here is what they all had to say.

The Transplant Coordinators (Michelle and Emily) attended our appointment off and on all afternoon. During one of their 'pop-ins', they explained to us the protocol for being on the transplant list, and / or receiving a heart when one becomes available. First, Madison cannot be sick. (no pressure on me..I now demand hand washing.) Aside from the fact that Madison's heart condition could worsen if she gets sick; they simply will not do the procedure if she is sick at all. She can't even have a cold - nothing. It's too risky and they won't do it. Second, we must always be within 2 hours of the hospital. Following Madison's transplant we will need to stay just as close to the hospital for about a year. Needless to say, we're not leaving Utah anytime soon.

Financial / Insurance Rep: Are you ready for this? Our health insurance is one of the many who don't cover transplant surgeries in Utah. Their reason is political and only has to do with dollars. A transplant is one of the most expensive medical procedures. Because of this, our insurance company has hand-picked certain hospitals within the US that are approved and contracted with them. Denver is the closest contracted hospital for us. (remind me to send our insurance company a Christmas card..) I have contacted our insurance company and they informed me the choice of hospital was based on fatality rate and cost per surgery. Denver can do it cheaper than Primary Children's. K-remember the rules above.. we have to live within 2 hours of the hospital and have to remain just as close for up to a year following Madison's surgery. It became obvious very fast that our family would have to re-locate to Denver. OR Madison and I would move to Denver for, who knows how long, and our famiy would be seperated.

Knowing this was Plan A, I tearfully asked if there was a Plan B available. I was so scared that this was our only option. I couldn't imagine how we were going to coordinate this. Were we really being asked to seperate our family? The Financial / Insurance person explained that Plan B would be applying for Medicaid for Madison. We applied. Madison's heart diagnosis qualified as a disability and Medicaid now serves as her secondary insurance. Medicaid has only approved coverage until her surgery. Once Madison receives her new heart, she won't have her disabilty anymore and Medicaid won't cover her. This is 100% ok with me. I am relieved and thankful that our family is able to stay together. Now we are definitely not leaving Utah for any reason!

Pharmacist: Following Madison's transplant, she could be taking 7-12 different medications. Half of these medications consist of steriods, blood thinners, rejection medication, and antibiotics. The other half of the medications are given to treat the side affects from the first half.

Surgeon: After an exhausting day, we had the opportunity to meet Dr. AK. I would meet with him again and again and again. He is brilliant and confident in the surgery he performs. He made Mark and I feel so much better. The feeling I felt while meeting with him, confirmed that Madison will be ok. She's in good hands. Dr. AK described in great detail the process of what happens from one life to another. He explained that in most cases, once the new heart touches warmth, it begins to beat on it's own, without any assistance from modern medicine. Dr. AK said, "God created the heart to beat and it simply knows what to do." As I have read other blogs, he was right. Many hearts simply start beating on their own. It is absolutely amazing. Dr. AK said it's a miracle and he has been given the privilege to witness it numerous times over. As he contined to explain this process of what happens between one life to another, I remember thinking how in-tune all medical staff must be when a transplant takes place. I thank him for his time that day and I'm thankful for the opportunity I had to meet him.

we can do this...


Anonymous said...

I'm so glad that the you have a whole team looking out for Miss Madison. I feel she is in great hands.

Ryan and Hilary said...

Ya!! I am so glad that the blog is up and running! I hope that you guys are doing well and that Madison is doing well. When is your next clinic apt? We will be there next Wednesday so if you guys are there I would love to see you. Thanks for telling me about your blog. It is such a wonderful way to stay connected. xoxoxoxo Hilary

Anonymous said...

Michelle, Jeff Reeves. Just read your comments on Abigail's blog. I don't know another way to get a hold of you, so I'll comment here. It is humbling to read Madison's blog: you, Mark, and Madison (and Cooper), have been through quite the journey, and have quite a ways to go. It makes our little journey seem so small.

What a beautiful girl Madison is. And what a blessing these little children are in our lives. A part of me wouldn't wish this on anyone, but a bigger part of me wishes everyone could experience what it feels like to have to completely surrender to God like the parents of heart patient must.

Our prayers will join the hundreds of other prayers in Madison's and your family behalf. We know they work.

Our cardiologist is also Dr. Gray. We met with a Dr. Mack, who was filling in for Dr. Gray, for our first follow up visit on Friday. He was a gentle man with a good beside manner. We met with Dr. Gray a few times before we were sent to Stanford, and he seemed to be a pleasant person. Are we in good hands?

The Simmons Family said...

I just wanted to drop in and say Hello. I just linked over from Abigail's blog. I had the pleasure of meeting the Reeves at Stanford last month when Abby was undergoing her open heart surgery.

I am Owen's mom, Andrea. We currently live in Phoenix and in October of 2008, were told that Owen needed a heart transplant. Unfortuantly, we have to seperate and it's from Phoenix to Stanford. I am SO happy that you were able to work it out to keep your family together in Utah. What a wonderful blessing!!

Owen is still holding his own and doesn't need listed quite yet. He has had a couple open heart surgeries as he was born with 1/2 a heart, so it's kinda like "been there, done that" so the thought of transplant isn't AS scary.

I just wanted to let you know that we are praying for Maddy and your family!!

The Simmons Family said...

I just called Miss Madison, Maddy.. sorry. :(

Family Scads said...

Hi! I'm so glad that I linked over to your blog. I know how hard this is for you. Our little guy, Beckham, received a heart transplant when he was only 16 days old and it has been such a crazy, amazing, hard, and wild ride ever since. But SO worth it!
I was going to comment about your insurance issue. Our insurance would not cover the transplant hospital in our state either (we live in Iowa) but they were forced to when Beck was sent there by accident and was to sick to be sent anywhere else. There was also a lot of other loop holes that we were able to get through. Send me your e-mail and I will explain more (this way my comment won't be super long!).

Lots of prayers and love your way!
-Kim Scadlock

Amy said...

Hey thoughts and prayers are with you! I got to know a mother and her little boy that were waiting for a heart in Palo Alto when we were there with Daniel's transplant. I can not imagine going thru waiting for a heart. I am glad you have a blog for us to read and for you, too. You'll find it very theraputic (sp?) Anyhow, prayers are with you! Sorry to ramble so much!

Heart Mommy said...

Hi Michelle,
I just wanted to read up on your two sweet bundles...I am Alex (Gator's) momma... Gator has HLHS which is the same as our Owen baby who is waiting for a heart too. We live here in Utah and are served by PCMC. Mark gave me permission to add Madison to my list of Heroes. My prayers are with your little family.

Andy and Sarah said...

The heart doctors are primarys are the best. I love them for what they do. You don't know me, my husband works for diamond rental tool divison. Our thoughts and prayers are with you and your family. We totally understand the medical part of things.

Summer said...

I am so glad you have found a way to stay in Utah for Maddison's transplant!!! That is such good news! I wish that were the case for our Mason!! I presently am struggling with the questions you listed in this post. Move the whole family? or seperate for an unknown amount of time?

I will pray Little M stays healthy as she awaits her mew heart!

Oh and yes, I do have Michelle and Emily's direct lines. I call several times a week as we presently are dealing with which hospital we might take Mason to for his transplant, and other heart failure questions that arise! You know!! But thanks for asking if I needed their numbers!

Thanks for sharing Miss Maddison with us!

Loves, Mason's Mommy