Tuesday, October 18, 2011

Wow.....clinic Monday??? Blah!

What I thought would be one of our easy in-and-out of clinic in 2 hours, turned into being much, much more; In fact, I can't remember very many crazier clinic days!  We got there at 7:30, had labs drawn and had Abby's echo with no problems, I think there was only 1 other patient there at the time.  Then we were just chilling, waiting for the transplant team, talking to our "heart buddies," actually kind of enjoying ourselves for a few minutes.  When the transplant team and Dr. E came in, we still thought that everything was good, then they left for a few minutes.  While they were gone, I had the genetic counselor come in to talk to me.  While she was trying to explain to me what was going on (more on this later), Dr. E. came back in and said that they decided Abby's echo showed some decreased heart function so they were in the process of trying to fit us in the cath lab schedule!  Then I started getting a little nervous.  They were coming in and out checking on Abby and rescheduling everything, at the same time the genetic counselor was trying to talk to me, at the same time Medco, the pharmacy company that our insurance company uses,the company that I've been haggling with for the past 5 weeks trying to get Abby's meds from, kept calling me to tell me more problems they had run into.   You know when you're brain goes on overload and it just kind of freezes, I've been there many times the past 5 months, and I almost went there again.  I almost had a breakdown right there in clinic.......but I didn't, I held it in :)   Anyway,  they got her all prepped and we walked into the cath lab before I had even really had a chance to think about what was going on.  They were happy to see Abby in the cath lab, not because she was there 2 weeks early, just because they love her, she's the perfect patient.  While she was having her surgery, I went and had my blood drawn (back to the genetic counseling part) grabbed some lunch and then they paged me, she was already done.  The good news was that her cath looked great, no problems.  The bad news was that when I walked into the recovery room, Abby was sitting up and she was mad, really mad.  I had never seen her so mad in the past 5 months (well, maybe when they wanted her to talk to the psychiatric team!).  She had only been done about 10 minutes and she was saying,  "I'm ready, let's go.  Let me get dressed now, I'm ready to go. Just let me go.....now."  I found out later, after they made her actually recover that she was so mad because the anasthesiologist made her go all the way to sleep, she just wanted use propofol, but he didn't want to do it that way, and it ticked her off!  She was not happy, but she got over it pretty quick-thank goodness!   Dr. E then wanted us to go back downstairs and have another echo before we left.  So, finally, at 3:00,  7 1/2 hours after arriving at clinic, we were on our way home.  The results of Abby's biopsy came back this morning and showed that she is in mild rejection.  Nothing to freak out about.  We just have to make some adjustments in Abby's meds and then go back up for another echo and clinic next Monday and hope that things look better.  I just keep reminding myself that I can't complain about all of the trips to Salt Lake, because we really aren't even supposed to be  home yet.  I think that this was just a reminder for us that we shouldn't ever become too complacent or comfortable, things are always going to come up, we just need to expect it and go with the flow when it does.  It was a good reminder.  It was so good to see some of my "heart mom" friends there yesterday, it's always is a good reminder that we're not the only ones that are going through these things right now, and they can understand some of the emotions I go through daily.

Now to the part that's a little more stressful.  It turns out that Abby's cardiomyopathy is genetically linked.  They found a mutation on one of her genes, the TNNI3 gene to be exact.  This is the information that I learned from our genetic counselor-I might not be completely correct on some parts, but If I'm wrong, I'll repost later: 

-Abby has had this gene since birth, it just didn't manifest itself as cardiomyopathy until May 18th.  It can be hidden for many years, sometimes people never even know they carry the gene.
-People that carry the gene often die from sudden death.
-It's possible that Abby received this gene from either me or her dad.  But it didn't have to happen that way, she could be the first one that carries the mutation.  We both need to be tested for the gene to see if we passed it on to her. I had my blood test yesterday, her dad hopefully will very soon.  It will then take about 3-4 weeks to get the results.
-If either of us carry the gene, there's a 50% chance that Britt and Brock do too.  So, if we carry it, they will also need to have the testing done.  We have all had echo's done, so if we carry the gene, we're okay for now.  If either of them carry the gene, there's a 50% chance they will pass it along to their kids too.
- There is a 50% chance that Abby will pass it on to her kids.  But, with the rejection meds she's on now, she knows she probably won't be able to have kids of her own anyway.  We were reminded of that sad fact yesterday too.  My response to that is.....don't worry about it now, because who knows where will be in 10-15 years when Abby wants to have kids, everything could change by then.  10 years ago, Abby wouldn't have even been able to have a transplant and look where she is today. 
-If I carry the gene, my mom and dad should be probably be tested so we know if I got it from them.  If they carry it, then my brothers and sister should probably be tested too. Then we'll have to see if it's passed to their kids.

It's a huge thing to think about.  For now, I'm just hoping and praying that neither Abby's dad or I carry the gene.  If neither of us do, then Britt and Brock are all clear and won't have to worry about it at all; But, if we do, I guess we'll just go from there.

Yes, yesterday's clinic was pretty stressful.  We didn't get home last night until about 8:00, and I still feel wiped out today.    I have lots of questions for the genetic counselor, so I'm glad I have her number.  One question I have is if Abby carries the gene, can it affect her new heart?  I just don't know, but I hope not.  I'm definitely not a gene specialist, or even a scientist (I only teach 6th grade math!) but right now, I wish I was.

My favorite comment I got yesterday was from a good friend and fellow heart mom.  She said that she was amazed that she was picked to be a mom to such a special little girl.  I feel exactly the same way.  I am amazed I was chosen for this and I wouldn't change it for anything!  Just spend a little bit of time with Abby and you'll know exactly what I'm talking about.  Heart kids are special, and even with everything we go through daily,  I'm proud to now be considered a "heart mom!"


  1. wow...I'm so sorry you had such a crazy day. What a good perspective on being a mom to a special girl. I need to remember that more often. I hope you get some good sleep tonight!

  2. Such a nice one.Thanks a lot for sharing.

  3. We opted out of the genetic testing, now I'm thinking twice about it. I remember talking to the Cardios after Severin was born and asking about the genetic link, he said if our technology was advanced enough all diseases and in our case defects could be genetically linked. Sorry for the hecktic clinic day, but at least they didn't hold you hostage too long!

  4. I'm sorry you are going through this. It is something that goes through my mind all the time. I'm glad they caught it early. Thinking of you guys. We'll keep you in our prayers and see you on the 31st.

  5. wow, what a crazy day! I have been blog stalking (not in a creepy way) and am just amazed by both abby and you! i always am so envious of how strong heart moms are that have to go through the ups and downs of everything! i feel like i got let off the hook, so i really admire how strong you are! being a heart mom is the best and you are a great one!

  6. Definetly crazy......so sorry!! But we will be praying for good outcomes on the genetic testing :-) And yes our heart kiddos are so very special and make life's trial all worth it! Take care and hope too see you guys soon (at clinic maybe).

    Hugs, Mason & Mommy