Thursday, October 25, 2012

I hate it when we hear the "R" word!

     It's all my fault, I take full responsibility.  I couldn't help it, I had to brag.  Abby had only missed a few days of school the whole first quarter, and I had only missed a couple!  Things were so good, we were smooth sailing!  I kept hearing and then repeating that now that we had made it through the first year things were going to be easy!  I shouldn't have started boasting about our success, I should have just kept my mouth shut because I jinxed us.
     A couple of weeks ago, Abby came home from school and told me that whenever she would sing in her choir class, she would have a hard time holding the notes, she said she would run out of air too soon.  I didn't know what to think.  I had also noticed that when she'd come in from jumping on the trampoline she would be breathing way harder than usual as well.
     Here's the problem.  There have been many times this past year when Abby hasn't felt great or has been extra fatigued.  It's extremely hard to know what to do, should I call the transplant team or not?  I hate to be too hyper-sensitive, but I don't want to miss anything either.  It seems like we have worried about things before that have turned out to be nothing, like when she had her lower back pains the past couple of months.  We tested for everything, but found nothing.  Her back still hurts, but we've decided she will just have to live with it.  I usually just don't do anything for a couple of days except just watch her more closely.
     Abby starting sleeping a lot more, she just didn't seem okay. She was also getting sore throats, headaches, sores in her mouth, and her pulse was a little higher than her norm. After being up with her all night Sunday night while she was throwing up,  I decided it was time to call the transplant team.  After hearing her symptoms, they decided they wanted to see us the next day.  So, after school we loaded the car and went to Salt Lake!  The whole time we're at clinic, and until we get all the results, It's like playing a guessing game.  What do you think is going on?  What are they going to say?  What are the lab results going to be?  I had decided, with all of my medical expertise :)  that Abby had a virus, probably CMV like she had last April,  She was acting exactly the same. First thing was her echo.  I've been wanting to see the echo of Abby's old heart, and finally, this week we were able to.  After Abby had her echo, they took us out to the computers and pulled up her very first echo that she got when we got to Dixie Regional on May 18th-I didn't even know they did an echo there that day, then right next to it they pulled up the echo that she just had done.  The difference was incredible, it was so cool to see.  Abby's heart was so sick, so incredibly sick, and now it's so strong, it's just awesome.  After her echo we went to meet with the transplant team.  Abby's lab results came back showing that she a low white blood count, her neutrophils were also low again.  Last time they were low, she had to get neupogen injections, and they were extremely painful, they made her bones ache.  Her levels were borderline needing neupogen again. If they drop anymore, we're back to injections, yuck, Abby doesn't like that at all.  We had to wait until the next day to get her CMV and EBV results.  Then they looked at her BNP which shows her cardiac function.  If you're in heart failure, your BNP is over 100.  When Abby first arrived at PCMC, I think I remember them telling me that her BNP was 1,200-severe heart failure.  Tuesday, at clinic, Abby's BNP was only 15!!!  That's probably better than the majority of people reading this post. She's got a dang good, strong heart beating in there!  Thank you donor!!   Then the bad news.  The doctors noticed a little thickening in her right atria-this can sometimes show rejection.  Her prograff level, which lets us know that she's taking the correct amount of anti-rejection meds to prevent rejection, came back extremely low as well, not good.  Because of these things and the way Abby was feeling, the doctors decided they wanted to a cath/biopsy to rule out rejection.....That was the thing we were not expecting.  We didn't think Abby would need another cath until her annual in May, but things were looking too fishy, so they scheduled the biopsy for the next day.  Yuck, another day in cold Salt Lake and another day that I had to get a substitute to cover my classes.
     Abby went into the cath lab the next morning.  Because of the events of the past couple of weeks with our sweet little heart friend Mia, I was extremely nervous, the last place I wanted her to go was the cath lab.  I think Abby was scared as well.    I had never been scared sending her back before, not once, but I did not want her in there yesterday.  I will admit that I had a little meltdown after dropping her off.  My rational brain was telling me that Abby had done this so many times before and that she hadn't ever had a problem, ever!  I knew that Dr. Day would take complete care of her.  I knew that if something did happen, we were at a place that was ready and equipped to help her, I knew all of that; But, unfortunately, that wasn't enough to make it easier.  I kept it together perfectly until I found my seat in the waiting room.  Even then, I was okay, until Dr. Molina came by and asked me how I was doing and if I was okay.  Poor Dr. Molina, I bet she was a little shocked when the tears started flowing!  After that, each member of the transplant team came and sat with me, and talked to me, and reassured me, and went to get updates in the cath lab, and listened to me.   They even called one of our social workers down to be there with me too.  I sure do love our transplant team, they were perfect.  Finally, after about  90 of the longest minutes of my life later,  she was done.  The cath pressures looked great!  I was certain that she wasn't in rejection.  The transplant team sent us home knowing that they'd call us with the biopsy results later that day.  We got the call just as we got to Cedar City, Abby Abby was in rejection.  Cellular Rejection is measured on a scale from C1-C5, C5 being severe.  Abby is C3, she's never been above C2 before.....not good.  They are treating the rejection with an overkill of steroids for the next five days, hopefully, this will make her immune system so weak that it won't attack her heart anymore.  When Abby heard this news she just started bawling, steroids for a 13-year-old girl is the very worst!  She's afraid she's going to get the puffy cheeks and gain weight again.  I don't think she will, we'll just have to see.  She's pretty upset about it now, lots of tears.  So, on top of whatever virus she has, she's also in rejection.  Monday, we'll do another lab draw to check her blood counts, and the following Monday we go back to clinic to see how things are going.  Unfortunately, at some point soon, she'll have to have another biopsy to make sure the steroids are doing their job.  Abby can go to school now, but she has to be so careful and stay away from germs as much as possible.  She's so susceptible to getting sicker right now.  Wow, we were shocked, we were not ready for the "R" word, it hadn't even crossed my mind.  But, it's okay, we can't complain, we've gone almost 5 months without anything serious, we were almost like "normal" people for almost 5 months and that's good.
     You know when things aren't going so great and then it just seems like the bad news keeps coming?  That's what happened to me today.  Today I was mad and discouraged and frustrated!!!  I had to go to the pharmacy to pick up some of Abby's meds, the ones that I can't get through the other 2 companies I have to order Abby's meds through.  When I got there, they told me that my insurance had "decided" that as of October 23rd, they no longer are going to cover one of Abby's meds called Valcyte.  This is a med that Abby has to have because it prevents CMV.  It's critical she's taking it now more than ever because of her low blood counts and her steroid use, the last thing we need is for her to get CMV again, it was awful.  This medication is not optional.  Here's the real kicker.......the cost of Valcyte for me now since my insurance won't cover it is...........are you ready????  $3,700 per month!!!!  That's right, $3,700 per month!!!  What the heck??  How is anyone supposed to pay that much money for a medication?  I'm not sure what I'm supposed to do.  I guess tomorrow I get to spend some time either trying to find a way to make my insurance company cover Valcyte, or finding a job that will pay me an extra $3,700 every month!  Ugh......sometimes being the mom of a heart transplant recipient is hard and exhausting.
     Let's end this post with some good things.  First, Britt's been saving her money forever so that she could get Lasik surgery, she's the perfect candidate, and she got to have her surgery today!  I'm so glad that we got to come home so that I could be there with her.  She said the surgery hurt, a lot, but I know that when she can see in a couple of weeks without her glasses and contacts it will all be worth it.  Tonight, she's sitting on the couch listening to the TV because she's not allowed to open her eyes.  She's feeling better already!  The next good news is that Brock's football team won region last week and they get to start the playoff games tomorrow.  Hopefully in 4 weeks they will be state champions!  Brock is playing great, he's so fun to watch!  Brock and Abby got excellent grades first quarter and so far Britt has straight A's her first semester of college!  I'm so proud of all 3 of them, they work hard and I'm lucky that they make school a priority.  As of today, I'm finally down 25 pounds!  Not bad for a stressed out, old woman like me!  I've got a long way to go to lose the rest of the weight I gained this past year, but at least I'm on the right track.  So, even though we're going through some tough things right now, we still have a lot to be grateful for.
    One more thing-For all of the people that have been trying to convince me to move to Salt Lake because it would be so much easier for me and so we could spend more time together-When we left Salt Lake yesterday, it was 37 degrees and rain/snowing.  When we pulled into St. George it was 70 degrees with clear blue skies.  This is one thing that is keeping me in St. George.  But, talk to me about it again next summer when it's 110 degrees and I can't stop sweating!  We'll just have to keep making trips up there and planning dinners and get-togethers so I don't miss you all too much!

Abby in recovery after her biopsy.  She was freezing cold, that's why there are blankets on her head.  She always requests lots of heated blankets.  In fact, for Christmas she's asked for a blanket heater!

Abby right before her cath, smiling as usual!  How can you not love that kid?

Britt getting ready to head into her surgery.  She's looking good in her bonnet!

Britt sporting her racquetball goggles.  She only has to wear them at nights for a week, but I think she should wear them during the day too just because they look so good.


  1. That darn ''R'' word, so sorry to hear this news. Abby, you are beautiful no matter what!! Do what you need to do to be healthy, girl. Love to you all. Hang in there. All is going to be well. (((hugs)))

  2. Sending lots of love and prayers to you and Abby, Michelle! We love you guys and will continue praying for good things for Abby and for you all! <3

    1. Praying praying for Abby and your family.Many of the drug companies have programs that cover the medication for free,contact the manufacturer.It is usually called patient assistance program.

  3. So sorry! Hang in there. You should contact the company that manufactures Valcyte. When Josh lost his job and we had no insurance (still don't) I got in touch with Merk who makes my Asthma meds and they had a program that we applied for and I ended up getting free coverage from Merk for almost a year. I can't imagine that there wouldn't be other similar programs out there.