Kittymomma's Adventures

Today’s Heart Month story is special to me. I have come to know Katie Parker, Leah’s mom, over the past year. The transplant team at Children’s Medical Center of Dallas gave me her contact information. I wanted to talk to another parent who had been through transplant, so I could get an idea of what it would REALLY be like.

Katie shared her experiences with me via email and also told me about her blog: http://parkerlife04.blogspot.com/. She and her husband Ross both contribute to it and it gives a very complete account of their life before, during, and after transplant. She did not gloss over the challenges, but it was immensely encouraging to me. I highly encourage you to check out her blog. The Parkers are just an amazing family and their story is highly inspirational.

Katie is a stay-at-home mom. Leah’s dad Ross recently received his doctorate. (Congratulations!) Leah has two (soon-to-be three) siblings. Leah is 6 and is now about 2 ½ years post-transplant. She is doing beautifully. Jacob is 4, Owen is 2, and baby Elinor should be arriving by the end of February!

Katie was a supportive friend to me when Lucy died and we empathized with each other when we both suffered pregnancy losses last summer. I am so happy for the entire family that Leah is doing well and that they will be joyfully welcoming a new baby in a few weeks. Leah is very excited to have a baby sister. J

Leah was born with left ventricular non-compaction cardiomyopathy (LVNC), which is another form of the disease Lucy had. Hers is also the first transplant survivor story I have gotten to share. I am so happy to have the chance to raise awareness of transplant and its blessings and challenges. (Contrary to popular belief, it is NOT a cure.) After reading so much about her and her family’s journey on their blog, it was hard for me to figure out how to encapsulate it in one blog post. After rereading posts this morning, I decided to copy and paste Katie’s summary of Leah’s condition from her blog. It was written before Leah’s successful transplant. After Katie’s summary, I will do my best to write a summary of Leah’s transplant and life now. So, this post is more of a collaboration. Without further ado, here is the story of sweet, strong Leah Grace.

We found out early on in Leah’s life that she has a serious heart condition called Left Ventricular Non-Compaction/Cardiomyopathy. Because of her condition, her left ventricle is very hard, which means that the rest of her heart has to work really hard to pump blood to her body. For the first two years of her life, Leah’s heart doctor monitored her condition closely and we waited to see what would happen. Since her condition was discovered, her left atrium has slowly grown, and it has now grown to be 3 times the size that it should be; there is a lot of pressure in there because it is pumping into a left ventricle that is very hard. In addition to her enlarged left atrium, her condition is also causing serious pressure buildup in the rest of her heart and pressure has backed up into her lungs.

Back in February of 2010, we took Leah to Children’s Medical Center in Dallas; we were told that their heart center was one of the top pediatric centers in the state. The cardiologist we saw was concerned with the pressures he saw in Leah’s heart via the echocardiogram (ultrasound) and Leah was admitted into the hospital that weekend for further tests. On the following Monday (2/21/2010), doctors did a heart catheterization and decided that the pressures in Leah’s heart were elevated to the point that she is in need of a life-saving heart transplant. She was sent home from the hospital at the first of March as a “Status 1b” transplant patient, because her heart condition was causing her to not gain weight or as they put it “failing to thrive”.

Since March 2010, we have been waiting for a heart. As you can imagine, there’s a lot of information that we have had to process about what is involved in a heart transplant, which I won’t go into detail about here. However, I do want to give some specifics about our day-to-day life while we’re waiting for the transplant, so that you can know how to better pray for us.

The biggest practical aspect of our wait is that the surgery needs to take place as soon as possible after a heart becomes available. We have a beeper that can go off at any time, and when the call comes, we will head to Dallas for the surgery. This also means that we have to stay within two hours of Dallas (thankfully, we live less than two hours away from Dallas or we would have to temporarily move).

Another practical part of our day-to-day life is that we have to be diligent in keeping Leah healthy. We must do this for two reasons. The first reason we have to be so careful is that many kinds of sickness are such that if she has them when a heart becomes available, she won’t be able to have the transplant, since during the transplant she will be given medication to shut down her immune system, so that her body won’t reject the new heart. The second reason is because her heart has to work so hard right now, she has a more difficult time getting over sickness than most kids.

Another big part of our day is medicine! Leah is on several medicines right now – she has two for her heart, one of which she has to take every 6 hours (including 1:00 am).

Thankfully, Leah’s weight has improved since coming home from the hospital in March of 2010. She initially had an NG tube and was on an appetite-enhancing medicine, but we were able to take the NG tube out in May, yet are still on the appetite medicine. Because she is still having a hard time gaining and maintaining her weight, she continues to be a “Status 1b” transplant patient. There is no way to know how long our wait is going to be, but with her being on the 1b list and with almost a year of time accrued, I think it is safe to say that 2011 will most likely hold lots of time spent in the hospital. (Our doctor said that most of the status 1b kids have to wait between 9 months to a year and a half). We’re so glad that Leah’s doing well, but the scary part is that her heart condition is so fragile that she could take a turn for the worst overnight. We do our best to not worry, instead being thankful to God for each good day.

Leah was going in for check-ups and ultrasounds on her heart every two weeks, but her recent “stability” only requires her to go to Dallas on a monthly basis. The transplant team is pleased with how well Leah’s heart is doing – it is functioning very well in light of her condition. So right now it’s a waiting game. It’s likely that we’ll still be waiting for some time, but it’s possible that it will be tomorrow.

We covet your prayers as we wait for Leah’s transplant. As big of a deal as the transplant will be, it will be the beginning of a life-long process for Leah of living with a transplanted organ. For the rest of her life, Leah will be on medication that will enable her body to accept her new transplanted heart. Additionally, the rest of her life will include yearly heart biopsies. We believe that if the Lord chooses, he can heal Leah’s heart completely, and this is what we’re praying for. But if God chooses to allow us to go through this, we are praying for strength for all of us, especially our sweet little girl.

Katie wrote that before Leah’s successful transplant on Sept. 8, 2011. Leah’s transplant went very well and there were no serious post-transplant complications. Post-transplant, Leah, Katie, and Jacob remained in Dallas for about 2 ½ months while the doctors at Children’s continued to monitor Leah’s progress. Leah’s rejection never went above 1R and was sometimes down to 0 (1R means that the body knows something is in there that shouldn’t be, but the medications are doing their job and preventing the immune system from damaging the new heart.)

This is what the first weeks post-transplant look like, according to the blog:

 “It looks like Leah will be released from the hospital on 14 medicines! The most important of these is her anti-rejection medicines, which she will be on (at some amount) for the rest of her life. The anti-rejection medicines are immunosuppressants. She is currently on Prograf and Cellcept, and in layman’s terms these medicines lower her immune system so that her immune system doesn’t attack the new heart. Leah will be on high doses of these medicines for the next 2-3 months, so during this time she is very susceptible to infections. Because of this, she will be home-bound and will have limited contact with other folks. We tried to keep her from getting sick while she was waiting on her new heart, but we’ll have to be even more careful for the next couple of months. That’s why she was wearing her mask today when she was out on her walk. The team recommends that Leah not be around other children during this time, because (no offense kids) they are more prone to pick up germs and spread them 🙂 I’ll be going to school/work, and then coming straight home. So our social life will be a bit limited during this time.

During these first 2-3 months, Leah will also be coming in for visits with the transplant team 2 times a week. One visit will be for blood work, and at the other she will be seen by one of the transplant docs. Every other week, Leah will be having a heart catheterization and biopsy  to check and see how her heart is doing.”

One month post-op, this is what Katie wrote about Leah’s daily regimen:

 “Leah takes 15 different medicines a day, at 6 different times throughout a 24 hour period, and she takes a total of 99 ml of medicine a day not counting 3 of the medicines that are in pill form that I did not add into this count. This is about 20 teaspoons of liquid a day.”

The dosage, amount, and types of medications can vary during a transplant patient’s life, according to their condition. But they need to take anti-rejection meds and carefully guard against illness for the rest of their lives.

I have even more admiration for Katie when I remember that she was pregnant during Leah’s transplant and the aftermath. Little Owen was born four months after Leah’s transplant. Luckily, they were home in Waco by then. I don’t know how she managed living in one room at the Ronald McDonald House with Leah, who was also recovering from transplant, and two-year-old Jacob, while she was also very pregnant. She is an incredibly strong woman.

To learn more about pediatric cardiomyopathy, please visit: www.childrenscardiomyopathy.org.

To learn more about organ transplantation, please visit: http://www.unos.org/.