Sunday, January 8, 2012

Just throwing it out there.........

Well, things have been holding pretty steady here at the Doman household!  Abby still has her cough and cold, but it hasn't gotten any worse so that is good, she was able to go to a little bit of school last week and hopes to go every day this coming week.  After a week of many phone calls both from the transplant team and me, lots of waiting and convincing, and only one minor breakdown by me, we were able to get  Abby's new med for her cankles and watermelon-size feet.  She just started it today, and since it also has potential to lower her blood pressure, we've been monitoring that, keeping in contact with the transplant team, and making adustments to her other meds as we go.  So far, her feet are still puffy, but it's only been 6 hours.  We are just praying that this does the trick!  For the price of the copay I have to pay for this medication, it just dang well better!!!!  The greatest thing is that se still have one week before we have to make the trip to Salt Lake again!  It feels so weird to not be going today, Abby keeps thinking it's time to pack up and go too.  It's funny how you can get into such a routine, and a little change throws you off.   It's been 10 days since we've been there and we still get 7 more.....yoohoo!!!

For me personally, it was a hard week.  Going back to school was tough, especially with Abby being sick and needing to stay home sometimes.  I worried about what to do if Abby got worse and I had to take her in to see somebody, I feel like I can't miss any more school than I already have.  I also felt like financially we've just barely been holding on, and now we have to add in this new med.  The cost of traveling up to Salt Lake every week, plus med copays and office visit copays, was getting pretty high and then when I heard how much this new med was going to be, it put us over the edge.  I do know that things will work out somehow, they always do.  Somehow, we always end up being okay.  I've been trying to go to the gym every morning at 5:00 this week too, and that 4:42 alarm about killed me!  But, in the long run, I know it will make me feel better.   

I've also been dealing with a couple of other things this week, and I think it's best just to throw them out there.  Sometimes, if you ask me how Abby is doing, I don't know if you want the truth, or just the quick, "she's doing great!" response.  If you do want the truth, then you've also got to know that it's not always going to be a rosy picture.  When someone gets a heart transplant, they aren't "fixed," it brings with it many other potential problems.  From what I've learned from other heart transplant moms is that usually, the first year is the hardest, then some things will slow down.  Because Abby's immune system is suppressed, she we also be at risk for other problems to arrise her entire life.  We hope and pray every single day that Abby will have an easy road, that she won't have to deal with these other things.   We want her to go against the statistics, she has up to this point and we believe she will continue to do so.  Abby is not "better," that's not how a heart transplant works.  Is she better than before she got her new heart?  YES, she definitely is, but unfortunately, she will never be "all better." If you ask me how Abby's doing, and I tell you that she is still struggling with some problems, it's because she is, not that I'm being negative, I'm just telling you how it is.  So far, Abby has been doing fairly well, but it seems like we've always had little things going on her with her.  She's had  minor rejection twice-which increased her steroid dose dramatically, severe migraines, swelling in her feet and ankles, and now she's sick with a nasty cough and cold.  Are any of these real serious?? No, but you worry anyway.  We are so grateful that she's doing as well as she is.  I cannot wait until the day when someone asks me how Abby is, and I can just say, "She is awesome and feels like a million bucks!"  If you don't really want to know how Abby is doing, just don't ask.  If you really want to know and you do ask, be ready to hear the truth, I'm not going to sugarcoat things for you, I will just tell it like it is.  Sometimes it varies from day to day too.  Sometimes, I might say she's doing great, and then the next day I might just be feeling overwhelmed that day and I might be careful when you ask, I can't guarantee what you'll get :)  Same goes with how I'm doing as well.  It depends on the day.  On some days, things are great and everything just feels "right," but other days, the future just seems hard and overwhelming and too impossible to face.  I can't always guarantee what you're going to get, so only ask if you're willing to take on what you might hear.

 The second issue is, do we still need your love and support??  of course we do.  A fellow heart mom said it best when she said to me that it's funny how the people around you "move on" once the major event is all over, while you're still working through the ramifications of the major event.  The support we need isn't the same as when we were stuck up in Salt Lake waiting for Abby's heart (thank goodness for that) but we're still dealing with a lot, we still need your support. I look back at everything that's been done for my family the past 6 months and I'm still in shock.  St. George is an incredible place to live, the community pulled together for us in ways that I never would have imagined.  My school, my Arrowhead friends, and our ward was just amazing too.  I don't think I can ever thank all of you enough.  A big thank you to all the heart moms out there and for the Intermountain Healing Hearts support group for your input on my questions this past week, you told me just what I needed to hear :)

This week on Thursday, is Abby's 6-month anniversary.  Can you even believe that she's had her heart for 6 months already??  We ask those of you that have Team Doman shirts to wear those and if anyone asks what the shirt means, explain to them the importance of being an organ donor.  For those of you that don't have Team Doman shirts, you can still come get one from me, or just wear red that day.  On that day, the 12th, we would like everyone to tell their loved ones their wish of being an organ donor someday.  We're not planning on celebrating every 6 months, usually just 1-year anniversaries, but to me, the first 6 months is big and is cause for a celebration!!  We are always looking for something to celebrate anyway.  Thanks for continuing to be a part of our story and for keeping up with us!  We love our readers.


  1. Happy Six Months to Abby!!! And I would love to get a team doman shirt if possible! If you ever need to vent, feel free to msg me on FB i'm a great listener! i don't have much experience in the heart world to help with advice, but sometimes its nice to just have someone to vent to!

  2. Happy 6 month transplant day! I hope you can all take time to just "breathe" it in. Enjoy this SLC free week

  3. 6 months! amazing! Great post. You said it like it is. Loved it.

  4. U seem to say that its very over whelming, about her cold and her meds, the worrying and the money.. but michelle always remember that god will never give you more than you can handle... u have said b4 that he pushes you to your limit then gives u a break. Bcuz he know you are strong, and ur family, and esspecially abby. She is the stongest person that I have ever met. This all happens for a reason. You will always get thru this. God is watching over you. He is always there for you and your family. And you have many wonder supporters friends, people you don't even know that support you and feel the love and the spirit from reading your blog. (I find it interesting to read the comments too) you are an inspiration and you will get thru this! Never forget that. Oh... and I vote you blog more... that's the only reading I do.... shhh don't tell my l.a. teacher... :) love you michelle and abby :) call me and text me if you need anything... your family is in our prayers! :) <3

  5. Best wishes to Abbey! A great milestone that should be celebrated as should every single day! From someone whom Mia Bella is very dear! Love to you all!

  6. Thank you so much for sharing Abby's story! We just found out our son has severe restrictive cardiomyopathy last week. A heart transplant is inevitable. He will be placed on the list within a few months to a couple years depending on how well his med cocktail slows the damage. Abby's experience has given me so much peace and hope. Thank you !!