Thursday, October 21, 2010

Still No Zero...

Well, we got the latest biopsy results yesterday and Bean is still sitting at a 1A status.  It was a little disappointing.  Our transplant team nurse, Nancy, was the one who called and she had not spoken with our cardiologist yet, so we should get a call today letting us know if we are making medication changes because of this.  Nancy said that the 1A status isn't THAT bad and that actually many transplant facilities view zero and 1A as clinically the same, but Stanford has seen some correlation between chronic 1A status and problems with the coronary arteries developing.  But, Bean just had her annual exam where they test all the pressures in her heart and the elasticity of her arteries and they found everything to be in great working condition, so they aren't as concerned as they would be if they were seeing things changing in her heart function.  So, that's good news.  But, I was definitely let down by the news.  Nancy had not talked to our cardiologist yet about what medication changes we may make, but they did take Bean off of her aspirin.  This is nice because it was one that we had to cut a tablet and grind it up and mix it with water every time, so the med regime got a lot easier with its removal!  Now we only have the lipitor that we have to cut, grind up and mix with water. 

Nancy mentioned that they may try putting Bean back on the cyclosporin that she was on before.  I can't say I'm very excited about that.  That med has a lot of side effects, many of which are cosmetic.  It makes the recipients hairy, a little bloated looking (its called moon-face - cheeks get big and the face rounds out), and for babies it can make teething difficult because it tends to cause rather dramatic gum swelling.  So, they're teeth literally get stuck under a bunch of extra gum tissue and they often have to have a lot of extra dental work because of it.  We think her early experience with cyclosporin (she was on it for about three months post-transplant) is why her teeth came in so weird (molars first, now only one on the bottom - she did finally get four on the top).  Don't get me wrong.  If it makes her heart work better, then of course I'll take it all, but if its going to be the same as with Prograf, the Prograf seems much better side effect wise.  And she was never a zero when she was on the cyclosporin either, which makes me think that it wouldn't necessarily change things.  But, we'll see. 

On one good note, we do get to go three whole months before the next biopsy!  That is one month more than we've been having between them for the most part.  It still isn't what we were hoping for.  The biopsies are definitely getting harder.  She got upset yesterday as soon as they started "bugging" her with the blood pressure taking and pulse ox and stethoscopes, etc.  She was just not wanting to be poked and prodded.  So, there was lots of screaming and crying and kicking.  Its exhausting trying to keep her from losing it every time they have to do something.  Then, when she comes out of the biopsy and wakes up, she gets REALLY pissed off because she has an IV in (she still wants to rip that out immediately upon seeing it - they have to put a little protective board over it and tape it up like a cast to keep it in) and a pulse ox on (which they also had to tape on because she kept taking it off) and all the leads for her vitals stuck to her.  And she has to lay still (supposedly - she doesn't do this well at all) for 1/2 hour or so while the wound heals.  So, she sprung a leak because she was crying/screaming so hard it started her cut bleeding again.  She finally calmed down for a while when we gave her a bottle, but it was not fun.  And I have a feeling its going to get harder rather than easier until she's a lot older and can understand a little better what's happening (and even then, she may not like it much...).  I do know that from now on we can not get up and drive from Chico in the a.m.  We got up at 4 a.m. and left at 4:30 a.m. and got stuck in traffic on the way, so we were late (stress), then drove all the way back and got home around 6 p.m.  That is one long and exhausting day!  So, from now on, I think I'm going to try to get a room at the RMH for the night before or stay with my parents who are about an hour away from Stanford.  The traffic is just too much to deal with before that kind of stressful day!

Today we are going to the Pumpkin Patch with the Chico Mothers Club.  I'm excited to go and think Bean will have a great time.  If I can find my camera (I have misplaced it somewhere and I haven't been able to locate it), I will take lots of pics!  She did recover well from her biopsy - she was great yesterday and had a very active day.  We went to the library for story time (where she is a star - she always goes right to the front in front of the story leader and claps and dances the whole time), then to play group at our local outdoor kids' park, Caper Acres where she climbed stairs, played in the sandbox, slid down a slide a few times (well, 1/2 way down, I would lift her up on it as far as I could reach and then hold her as she slid down - she loved it, but wouldn't slide down from the top on her own), and got knocked down by another little girl playing there.  Actually, she got knocked down by bigger kids twice yesterday - at the library, a little boy wrapped his arm around her neck and basically threw her down.  Luckily she was on the carpet and he wasn't much bigger than her, but it definitely scared her.  His mom was very apologetic, but it makes me glad she isn't in daycare.  She is just so small compared to kids her age.  Then at Caper Acres, the cutest little girl with blond hair was walking across the playground and her mom was trying to get her to leave and Bean walked up to her (like she does just about everyone - she is very social), and she just reached out and pushed Bean in the chest and knocked her down.  It was so weird.  The mom tried to get her to apologize, but it was not happening.  She just sat there tight-lipped.  Again, Bean wasn't hurt, but it definitely shocked her and she cried for a while.  So, big days for Bean...going places, seeing things and getting knocked down!  :)

Hope everyone out there reading is having a good week and is looking forward to a good weekend.  It is supposed to be raining here this weekend and although I'm ready for fall, I'm hoping the rain isn't too hard as we'll be at a Speech and Debate tournament all weekend and can't avoid going out in it because of that.  But, I am happy to see fall weather finally coming! 

1 comment:

  1. Hi,
    I saw found your blog through you following my blog. Bean is such a cutie! Even though I may be a tad bit older than Bean (about 20 years) I am have the same issues as her!
    So we had heart transplants within a few months of eachother, at Stanford, because of CHD.
    I went from cyclo (Gengraf) to Rapamune (Sirolums) just this week mostly because I never had gotten a 0 on my biopsy, and my annual showed inflammation in my heart. I also had tapered off the prednisone for about 3 weeks, but I am now back on this.
    I read in one of your posts that Bean was having troble with her magnesium levels, I had more trouble with this post tx, than pre tx and post tx I found that magnesium with protein or amino acids (taken with food) were easier on my stomach than any other kind of magnesium.
    I also HATE staying still after a left heart cath, I am soooo bad. Alot of people have trouble with their backs after transplant, so laying in (uncomfortable) hospitable beds or gurneys is really painful.
    I am enjoying reading you blog,


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