Thursday, January 26, 2012

So, so close to a perfect clinic :)

I know it's been 3 days since we got back from Salt Lake and I'm just barely now getting around to posting, but, I have a good excuse.........I just got tired.  I don't know if it was 2 trips up to Salt Lake in one week, or Abby going through her biopsy/cath, or maybe getting Britt ready for senior ball, or teaching school, or maybe driving home in the worst snow storm ever, or maybe it's still that crappy virus I've had......but, I feel kind of like I've been run over by a truck and it's taken me this long to get the energy to post.  Abby's biopsy/cath/clinic was almost, almost perfect!!!!

The morning started out perfectly!  Abby was 1st case in the cath lab so we knew we wouldn't get a late start.  I sent her in and then went down to the famous Rainbow Cafe and had my routine oatmeal.  I didn't even really feel like eating anything, but it's such a habit now, I just had to do it!  Then I went down to wait for the pager to go off in "my spot" and that's when I ran into another heart mom!!  How great was that?  We hadn't ever met before, but she knew who Abby and I were and I knew who she was, so we got to talk for a few minutes, it was a great way to spend my waiting time!!  When the pager went off, I went down to talk to Dr. Day, he said it was the best cath that he had seen on Abby!!  I knew it would be good.  Then I went up to recover with Abby in the pacu.  Abby is always in such a hurry to get out of there, she hates it in that place and just wants to leave.  I'm pretty sure the recovery nurses think she's annoying.  As soo as they let us leave, we walked down for clinic (Abby always refuses to be pushed down in a wheelchair, she prefers to walk!)

Abby then had an EKG and then it was off to the echo lab.  After the echo, it was time to meet with the tranplant team.  Some good news????  Her swelling has improved!!!  There's only a little bit now, and it isn't as painful.  I guess her new med is doing the trick.  Dr. E. diagnosed it as exercise-induced pulmonary hypertension.  We are sure if it will just go away on it's own, or if she'll have to stay on her meds for a while, we'll just have to wait and see.  Some other good news????  Abby no longer has to take Valcyte (the most expensive med she's been on, to bad I just paid for 3 months worth!!) and she's now off aspirin too!  She's finally, very slowly coming off some of these meds!  The plan when we left was that if the biopsy came back clean, she would taper completely off of the steroids too.  Yippee!!

We left the clinic feeling awesome, everything was looking good and we weren't scheduled  to go back until February 13th-3 whole weeks, our new record!!!  My only worry was the drive home, which was horrible.  It started snowing in Nephi, and didn't stop all the way home.  It took a long time and there were lots of cars off of the side of the road, but we just took our time.  We stopped in Cedar City for a break and that's when I got the call from the transplant team, perfect timing.  Abby's biopsy looked perfect :) but...........her prograff level (for those of you that know what I'm talking about) was only a 2.2!  Last Monday when we were there it was 6.6, it's supposed to be between 8 and 10, so we had increased her dose, and so for it to drop that fast was way abnormal.  I had to guarantee the transplant team that yes, Abby did take her meds last night, and yes, I did give her the right meds and didn't make a mistake.  They said to immediately give her 2 mg of tacrolimus, an anti-rejection med, and then we increased her dose to 3mg am and pm.    Then we agreed to take her in for a blood draw later in the week, which was this morning, so we're still waiting to hear the results.  At about 9:00 that night, Dr. E. called asking me again if I was sure she took the right meds at the right time!  I assured her that we did everything correctly.  We decided that Abby just doesn't want us to stop thinking and worrying about her, she likes to keep us on our toes!  I'm pretty sure her level is too high now, because she's had a headache and upset stomach for the past 2 days, but we'll make adjustments when we get the results back.

We still felt really good about clinic, I feel like a huge weight has been lifted off of  my shoulders.  I think I was really, really worried about that one and when we heard that everything ws okay, it felt good.  I still stop at least once every day and it hits me like a ton of bricks that this is my Abby that all of this happening to, she had a heart transplant, and now has a new heart beating inside of her.  It's such a strange feeling.  I guess that once I truly accept it, it will then become my reality and it won't be such a shock to me every time I think about the past 8 months. 


  1. awesome post! I'm glad you are finding a little more energy. Super exciting you don't have to go back till the middle of Feb! And honestly, if you need a place to crash for the night, you are more than welcome at our place. It is so therapeutic and healing to get to talk to other heart families. I hope the snow lets up for you next time. Keep going Abby, you're doing great!

  2. Yay for good results! You guys are such a strong family, I love reading about you. You uplift me so much. Keep the good news coming with Abby and her progress! We are praying for you guys.

  3. Congrats on the good results! I laughed when I read about them asking you if Abby took the right meds... If they read this blog, they would certainly know how diligent you guys are!

    A heard about a boy in my city, who was listed for heart transplant, and ended up receiving the heart 4 hours later!!!

    If more people read blogs like this, that share how great life is for the transplant recipients and their families, I'm sure this rare occasion would become more common!!