Monday, January 30, 2012

The faces of CHD-Pinterest awareness challenge

The week of February 7th is Congenital Heart Defect Awareness Week. Did you know that 1 in 100 babies is born with a heart defect?  The first time I heard this, I couldn't believe it!  1 in 100....that means in my school, there could be 7 kids that have heart defects of some kind.  I wonder how many haven't been diagnosed liked Abby's was before may 18th.  Pinterest is doing a project to make people more aware of congential heart defects, it's awesome.  I know that you've all read Abby's story, but there are so many other stories out there!!!  There are so many other little miracles taking place in the world all of the time.  The link is   I'm sharing Abby's story, but if you click on this link, you'll have the chance to read many others as well.  I want to do my part in making people be more aware of congenital heart defects!!

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. 

Wednesday, January 18, 2012

Abby in the Paper

Hey everyone! This is Britt.. my mom asked me to post the link to the article from the paper, but to read the article from the spectrum, you have to subscribe. But if you search the article on Google, then it will show the article. So, if you want to read it.. follow these easy steps
1. go to
2. search.. back to school, heart transplant patient keeps positive outlook
3. click on the very first link that comes up, and that should be it! 

Tuesday, January 17, 2012

The good news far outweights the Not-so-good news!!!!

These clinic days are supposed to be getting easier, aren't they??  For some reason, they just wear me out!  By the time we get back to St. George, I'm just one tired mama!  I'm going to try to break this post into "Good News" and "The Not-so-good News," but lots of the things go into both categories, so it will probably be scattered......oh well, I'm kind of scattered right now too :)

The Good News:
-Abby doesn't have to take Nystatin anymore!!!  This is the greatest news ever, the stuff is nasty.  It's this thick liquid that looks a little like orange juice.  She's been taking it 4 times/day for 6 months...that's a long time!  But, as of today, no more Nystatin!!!

-We had a snow-free drive......again.  I have to apologize to all of you snow lovers for the lack of snow this winter.  I take all the blame.  Abby and I need to get back and forth without having to worry about snowy roads too!   I'm sorry, but you know we have someone watching over us and if that means not a lot of snow this winter, then I guess that's what's going to happen.  Let's just hope it continues!!

-Abby's echo looked great today!  Everything looked perfect.

-Only 1 poke in the lab-that's always a bonus! 

-Abby can start soccer practice again this Thursday :)

-Abby's not sick anymore, the virus she had cleared up really fast-less than 2 weeks!  We are lucky.

-Britt started taking classes at Dixie State along with her high school classes.  This is good because she was getting a little bored.  She's also volunteering in the ER and loves it!  I guess nursing just might be her calling.

-Jon (my brother) and Deedee(his wife) let us stay at their house every time we have to go to Salt Lake.  They only live about 5 minutes from PCMC and Abby loves to hang out with her cousins.  Thanks Jon and Deedee and thanks Mina for giving up your bed so much!  This sure makes our trips easier.

-My body has been working so hard to fight off Abby's virus and Britt's virus, and so far I'm hanging in there.  I've felt them both coming on, and other than making me extremely tired, I've been doing okay.  I just keep telling myself that I can't be sick right now, it just can't happen.  So far, it's been working.

-Abby's 6 month "heart-a-versary"  was awesome!  We loved seeing all of the Team Doman shirts and people wearing red.  A big thank you to everyone that supported Abby on January 12th.  We loved all of our visitors that afternoon too, we will post some pics soon.  We haven't been too good at taking pictures, but that's my goal, I will do better.  We could feel your support, and that felt good! 

-My blog helped a woman in Ohio feel peace.  Her son was recently diagnosed with hypertrophic cardiomyopathy and they are just beginning the transplant process.  It made me feel good to know that even though it's sometimes hard for me to put my feelings out there for the whole world to see, because I was willing to do that, I made a difference to someone else, I made her feel stronger and that she can do this too!  Thanks Shannon and Melissa.  Knowing that I gave you strength, made me feel stronger too.

The Good News that could also be Not-So-Good News:
-Tomorrow, we're going to start a very slow steroid taper again.  Abby's on 5 mg/day now, and we're going to get her down to 2.5 or even less, but it's going to take a while, we're only decreasing 1 mg every 3-4 days.  This is good news for Abby, she's tired of the side effects.  Once we get down a little farther on her dose, we'll also be able to go off a couple more meds too :)   The reason this is not so good is that both times we've gotten down to 2.5 mg, Abby has gone into mild rejection, so we are scared.

-Brock has started taking driver's ed, he should get his license in a few weeks.  Good news because I have to drive him a lot, or he always has to find rides and that's a pain....bad news because have you ever paid car insurance on a teenage boy??   Luckily, he's a good, responsible kid that I can trust driving.  He's just going to love my old, red van.  It's epic, it's tight  :)

-Today, they tested Abby for everything to see what's going on with her and her swelling and her tiredness.  They filled about 10 vials of blood.  This is good because we thought we'd get some results and be able to take care of the problem....but, so far, everything has come back looking great!  Good news, right??  Well, yes, but then what's causing the swelling??  We don't know, the docs don't know, nobody knows.  Right now it's just a puzzle to everyone.  We are still waiting on a few labs, but so far, we are still in the dark.  I could tell that Dr. E was frustrated today and so was I.  If we could just find the cause we could treat it and move on.  It was a discouraging clinic.  As for now, we are just going to mess with some of her meds again and see if that will do the trick.  We don't want any more swelling, it's painful for Abby!

-Britt has had some stomach virus for 5 days.  She's been feeling like crap and can't keep anything in her stomach.  It stinks for Britt.....but, she's lost about 10 pounds in 5 days (that's why it can be good news too.)  I need this virus.

The Not-So-Good News
-Abby is tired of not feeling good.  It's been too long and she got so frustrated today because they couldn't figure out what's going on.  She even had a little meltdown in clinic.  It was so sad and so hard to see her crying.  She's been so strong for the last 8 months, but this is just too much.  It made my heart hurt to see her be discourged.  You know that if Abby is struggling, that it's been hard, really hard.  She needs a break and some "I feel good!" time.  She could use your prayers to help her continue to be strong.  I know just how she feels, we just need things to settle down and for everything to look perfect and for Abby to feel perfect.  I think she deserves that, probably more than anyone I know.

-We have to go back up for a cath/biopsy on Monday.  That will only be 4 days at home, then we hop in the car and head back up on Sunday...again.  I know that the biopsy and the cath will look awesome.  I still don't think any of this is heart-related, her heart is perfect.  But, I'm also glad that they want to make sure.  I think I might have a record....I've put 20,000 miles on my car since the middle of August.  5 months-20,000 miles-that's a lot :(   Oh well, we will do what we have to do. n The biopsy will rule out rejection.

I loved doing this post because there is much more good news than not-so-good news!   Eventually, things are just going to be good, I can't wait for that time and either can Britt, Brock, and Abby. I will post again on Monday after the biopsy!  Thank you for your continued prayers and support, we are one lucky family!!

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.

Sunday, January 1, 2012

3 failed resolutions already.......oh well!!!

Oh how I wish this break wouldn't end!!!  We have had the greatest time, I think we all really needed this time to be able to just have fun and not worry about regular life.  It seems like ever since we moved back in October, we've just been trying to adjust to our new "normal" routine, and it has been a hard adjustment for all of us..... but this past week and a half we've just been able to enjoy spending time with family and friends-just what we needed, and even relax a little bit too :)

Clinic last Thursday went well, no problems at all!  Dr. E. decided we're going to try Abby on a new med that she thinks will help with her swelling in her legs and feet.  We all agreed that we don't think it's her heart that's causing it, but Dr. E thinks it's her pulmonary hypertension again.  This is something Abby had right from the beginning, but all of her cath's have shown improvement, but for some reason, it's gotten worse again.  They are working on getting the med approved by our insurance company, which can be a hard process, and then we'll get Abby started on it and hopefully she'll have some relief!  Because we're starting Abby on a new med, the transplant team was reluctant to taper her steroids at the same time, so I guess we'll be waiting for that until our next clinic visit.  If you're looking for something to pray for, Abby would appreciate it if you'd pray that the new med will be approved and that when she does start taking it, it will help with her swelling.  It's become a daily nuisance and is preventing her from being able to do the things she wants to run and play soccer!  If all goes well, we don't have to go back to clinic until the 16th!!!  This is the longest time we've spent away from PCMC since May 18th-this is awesome, but a little scary too! 

As far as New Year's resolution's go, I already broke 3 of mine today.....this has to be a record!  One of the things that I wanted to do in 2012 was to keep Abby healthy.  Well, she woke up today not feeling so great.  She has a cold and a sore throat and a slight fever....not good.  I will be calling the transplant team tomorrow to see what we need to be watching for.  Yes, we're nervous.  We've been told for the past 6 months that we can't let Abby get sick or she could end up back at PCMC or won't be able to fight it because of her immuno-suppression, and will be sick for a long time.  We tried, we really did!!  Now, we're just hoping that everything works out okay.

This brings me to the 2nd resolution that I broke today-I wanted to do a better job of dealing with things as they come up with Abby.  I want to learn to not overreact, and to just be calm and think through things before I worry too much.  Well, when Abby woke up sick today, my resolution didn't work out so well.  I will admit that I panicked and my mind starting going to the "what-if's" again.  Luckily, I have good friends that can bring me back to reality.  I'm sure I'll get plenty more opportunities to work on this resolution.

My 3rd failure today was that we wanted to be more consistent about going to church this year, but, we didn't get to go today because Abby is sick.  It was hard to be consistent this past year because of everything that happened, and then we've been trying to keep Abby healthy, but I was just feeling like finally, we were going to be able to start going all the time again....this was supposed to be the day!  But I guess next Sunday will have to be the day instead.

Another thing that I want to work on this year is that I want to continue to value every friendship and relationship that I have.   I can't even tell you how many times just that one blog comment, email, text, phone call, etc.  is what pulled me through the tough times.  Or that just knowing that people were there that cared for us and wanted to help us made things bearable.  I want to be that person that makes a difference.   I want everyone that I know or come in contact with to feel that by knowing Michelle Doman, their life has been enriched in some way.  I know that this is going to be a challenge, some relationships are tricky, but I also think it can be done. 

Another thing that I'm going to do this year is to accept what has happened to Abby, accept the changes that have taken place in my family and in my life because of it, and accept that this is our new reality.  I don't think that I've done this yet, I'm still in disbelief a lot of the time, but I think acceptance is just around the corner.

I'm going to be working on lots of other things, mostlythey involve caring about some things more and caring about other things, things that don't matter as much or that I can't control a little less. I'm really hoping and praying that 2012 is easier for the Doman family than 2011, but hopefully, if we make things easier we can still experience the miracles and still recognize the tender mercies!!