Thanksgiving gratitude…

How do I even begin to express the gratitude in my heart? We’ve been through so much this year, but I don’t think I’d change any of it. Gratitude overflows from the depths of my soul for a family who is missing someone they love this Thanksgiving, and the gift they gave so that we didn’t have to be missing one we love. I’m also grateful for so many miracles and love from our Savior and Heavenly Father that strengthens us beyond measure. I’m so very grateful for all our family and dear friends who have loved and supported us through it all, and continue to do so. My family means the world to me, and I’m just so thankful today that we’re together.

Happy Thanksgiving!


Baseline Heart Cath & Biopsy

BiopsyPrepBright and early (6:30 a.m.) Friday morning, Sarah was prepped and tiredly, though anxiously, awaiting her baseline heart catheterization and biopsy. This is the one that’s very in-depth and gives us a baseline for comparing future caths. They go through an artery in her groin as well as through her neck and look at her heart from every angle. They thoroughly check her coronary arteries along with everything else they can see. Because the procedure would take three hours, she had them put her out completely for this one. Afterwards, in recovery, she had to lie flat on her back for four hours. Thankfully, she had asked for zofran in her IV at the beginning of the procedure, so for the first time in her adult life, there was very little nausea accompanying the general anesthesia. Everything went really well, and things looked good.

In addition to the cath and biopsy, they also needed a clinic visit, EKG, echo, and chest x-ray. Albumen levels are holding steady at 3.3. Her wedge pressure and BUN (tell about overall heart function) were better than ever. Her heart muscle is squeezing perfectly, and everything looked healthy and happy. The doctor gave her permission to ditch her mask more often, plans were being made to go back to work, and we talked about a two-month span before our next visit. We were hanging around the hospital waiting long enough to get biopsy results back. …And we found out that she has mild cellular rejection. This changed the plan for the next month drastically, but we realized in minutes how very blessed we are.

Just a reminder about rejection…. The word sounds so very scary, and although it can be very serious, the kind Sarah has right now is more a “miscommunication” within the cells of the donor organ and the recipient’s immune system. When her last biopsy was clean, they brought her down on her cellcept (mycophenolate – anti-rejection drug) to a lower level that’s acceptable for her size. Her body must have needed the higher level to stay at a safe balance, so the rejection started showing at a cellular level. They have increased her drug level again to what she was at before, and have started her on a super high steroid dose and taper for 23 days. The steroids will kill her immune system, and essentially erase the cellular rejection. They will re-biopsy again after the treatment, and we’ll be patient and pray that’s all it takes to do the trick. She’s not excited about being on the steroids. The high doses and no immune system means living in a “bubble” again. It could make her extremely moody, and ravenously hungry (don’t see a downside there). Her cheeks will get puffy again, and her cheeks, hands, feet and ears will get red and hot. It probably won’t be comfortable, but at least she won’t have to go through it in the ICU this time. She’s a fighter and her courage and strength has already pushed her through her first two days.

Now, the bright side…. Like I said, it didn’t take us very long to see the good things about this situation. It really does stink, but oh, how grateful we are…

  • Cellular rejection is easiest to treat, and is treated simply with medications.
  • Sarah’s rejection is mild…which means taking care of it at home with oral meds, and not in the hospital with IVs.
  • The rejection was found early, while it was still able to be controlled.
  • Sarah has been blessed to be rejection-free for seven months. It is very common to have some kind of rejection within the first year, and a lot of patients we know have experienced it at least once within the first three months.
  • We were so tired and ready to be home by the time we got this news, but were then immediately grateful to be receiving it along with meds, instructions, and assurance that we need not panic.
  • The boys and I have the whole week off from school this week, which means we’re not bringing home icky school germs while Sarah’s on the highest doses of steroids.
  • Sarah got to go see Hunger Games at a premier preview on Wednesday night with Rachel. (Being stuck in her safe bubble for the next three weeks, she wouldn’t have been able to go see this until it came to the cheap theater, or worse…on DVD.)
  • Her brand-new book she ordered months ago came on Saturday, just in time for her to cuddle up and read through her period of imprisonment.

I’m sure there are more blessings that we’ll discover as time goes on, but for now, we will remain hopeful and happy that things are as they are. One thing we know is, they could always be worse. With steroids erasing her immune system, Sarah is very susceptible to any virus or infection. If you come to our house, please remember to wash or sanitize, wear a mask if you could be or have been sick, and help us keep her safe. She still loves skype, phone calls and texts. The little “ding” from her phone makes her feel loved.


Letter to an Angel’s Family

willow-tree-angel-of-the-heartWell, I finally did it. I wrote a thank you letter to an angel’s family. It was a very teary process, but it’s done, and it’s as perfect as I could get it, and it’s ready to go out in the mail tomorrow. I must have started it at least a dozen times in the past 6 months. I felt really strongly on Sunday, though, that no matter what ended up on the paper, it had to be mailed as soon as possible. I don’t want Sarah’s donor’s family to feel like we don’t appreciate the gift she has been given. On the contrary, I believe our overwhelming gratitude is what made it so difficult to express what we truly felt. This gift was a miracle beyond words.

I feel relieved that it’s done, and now I’m anxious to see if we get a response. To keep it confidential, the letters are sent through the social workers of the donor family and recipient, with donor services in the middle. We may never hear from them–that’s completely their choice–but at least we have tried to express our gratitude and love for them and their unselfish gift. They will know the impact of Sarah’s new heart in her life, and the incredible person that was saved by someone they love. I hope it brings them peace, and that they can feel our love.