Sunday, January 22, 2012

Another not so uplifting update

Matthew had an appointment this past Thursday, like most Thursdays! I think I may have cursed our situation because I told my Mom "this appointment should be a quick one- in and out." Not quite the case!! We did blood work and made it through the echo with ease. Then, Dr. Molina came in and told us that his echo showed that Matthew has developed some mitral valve regurgitation. For the past week he's also had a few symptoms at home that have developed as well. He's been a tad bit more sleepy and had a really wierd heart beat when Matt and I listened to his heart last Sunday night. The transplant team decided that Matthew needed to have a heart catheterization as well as an EP test with an electrophysiologist cardiologist that day. What??? I think I appeared to be holding it together okay for Matthew, but I was actually freaking out inside. In fact, when they took Matthew back to the cath lab I almost threw up. About 1 1/2 hours later one of the transplant nurses called me on my phone and told me that Dr. Everitt wanted to talk to me. The interventional cardiologist was done with his portion of the testing and she wanted to discuss the results with us. Thankfully, Matt left work and made it to the hospital just in time for our meeting with her. Long story short, she told us that she felt like it was time to re-list Matthew for another heart. He is beginning to develop too many characteristics of and problems from the coronary artery disease we discovered he had back in October. Now do you understand why I never sleep so good the night before a "routine" cardiology appointment? It wasn't a complete surprise. We knew this day would come. But, like most things in Matthew's life this day came much sooner than expected. Matt and I spent the next 1 1/2 hours(while Matthew was still in the cath lab with the electrophysiologist cardiologist) meeting with several required people to get Matthew back on the heart transplant list. Talk about Dejavu. We were meeting with all the same people less than two years ago. This sparked a bunch of early "transplant" memories. I think Matthew's hellish ordeal that first week after transplant pains my heart so much still. I just don't know if I can watch him go through that again (if you don't remember you can read some of the earlier posts from this blog). I guess we'll pray for strength and cross that bridge when we get there.

The electrophysiology stuff ended up not being atrial tachycardia like his ECG's and holter monitors were suggesting it could be. That was a relief. However, what they are seeing on the ECG probably indicates more damage caused by his coronary disease. All of this information solidifies that moving forward with re-transplantation is the appropriate step to take now, unfortunately.

So, what now? He's not on the list yet. Hopefully Matthew will be listed by next week. Yesterday Dr. Everitt called to tell us that some of the bloodwork came back positive for CMV. This is a virus they watch very closely in solid organ recipients. CMV can cause all kinds of infections in immune suppressed individuals like gastroenteritis, pneumonia, esophagitis, etc. More worrisome to me though, is the fact that CMV can attack specific organs. Matthew has never tested positive for CMV until now, but we knew his donor's heart was positive for CMV. We go to PCMC tomorrow for more blood work to see if this virus is coming or going in Matthew. If he's cleared it on his own, we are good to go. If he's just getting it, it will probably mean Matthew will not be able to be re-listed until the virus is under control. This is usually treated with an IV anti-viral drug called Gancyclovir. We'll see..... things are always changing.

Kind of a nightmare, but I woke up and that's still the update of our family's life. We'll take it one day at a time and keep trudging through. We REALLY appreciate good friends, wonderful ward members, our amazing family, and the love and support from all of you! Thank you so much!


  1. I was reading an article by Columbia University's Dept of Surgery, and it stated that in 1984, the world's 1st successful pediatric heart transplant was performed there on a four-year-old boy. He received a second transplant in 1989 and continues to live a productive life. I know this is not Matthew's exact profile, but look what they were able to do twenty years ago.

    Also, a study out of Loma Linda University Medical Center and Children's Hospital cites that re-transplant in children can be performed with acceptable mortality and that intermediate-term survival after re-CTx is SIMILAR to children undergoing primary cardiac re-transplantation. Long term is not known.

    I also know that you have to prepare for the worst. But, like you said, cross that bridge if you come to it. In the meantime, have faith! Sometimes, a miracle happens...

  2. Chrissy,
    I'm so sorry you have to watch your little boy go through so much. You are an amazing mom and I can't imagine trying to handle all your family has had to handle. Once again I guess I'm thankful for my own trials. But my heart still breaks for the many difficult trials I watch my friends and family handle. I know you must be very busy taking care of Matthew but if you ever need a listening ear or someone to vent to that isn't directly involved in your daily life, I'm here, I'd love to just chat sometime. I remember when we chatted shortly after Gabie died and it was very nice to talk to someone who wasn't always hearing me say the same things over and over. It was also very nice to hear someone else's perspective and advice who wasn't grieving with me directly.
    Love Amy

    1. Thanks Amy!! You have been through A LOT yourself!! I look up to you in so many ways. I really appreciate you!

  3. We are thinking of you and praying for you always. I cannot even begin to imagine how difficult it was to have a standard cardiac appointment turn into this. Thank you so much for the update.

  4. I have to add, my previous comment is actually quite watered down and generic :). I have gone through so many emotions since I heard of this latest news... Please know that my heart aches for your family. I admire you so much, and am so thankful for your example. We are hoping for the best! You are an incredible mother.

  5. I am so sorry to hear this. My daughter had her heart transplant two and a half years ago, and although she has done amazingly well for those years, each appointment, each slight illness, each blood test seems like a cruel waiting game. Like you said, it seems like just when you start to feel a little more comfortable, something happens. I hope that your son is able to get through this latest health issue and future treatments with minimal problems. And I will keep your entire family in my thoughts and prayers.