A perspective on life, 3 years post transplant. By both Abby and Michelle

Last Saturday, the 12th, we celebrated Abby's 3-year heart anniversary.  It's hard to believe it has only been 3 years, it feels like a lifetime.  We celebrated the day by paying it forward in honor of Abby's donor.  We still don't have any information on who her donor is, but that's okay.  I've decided that maybe we never will, and that's okay too.  If it's meant to be, it will happen.  For now, we'll just keep thinking about and praying for them and their family.  We are definitely grateful.

For our blog post to celebrate 3 years, we thought it would be a good idea to share what life is really like now, both for me as the mother of a child that has a new heart, and from Abby, a heart transplant recipient.  Our story is probably very different from other transplant kids, every kid is so different and has different ups and downs.  We try very hard not to compare Abby's story to other heart transplant kids, it's like comparing apples to oranges; that being said, this is Abby's life now………

Abby

Hi everyone! It’s been a while since I’ve done a post on here, but my mom and I thought it would be a good idea to tell you guys what our lives are like approximately three years after receiving my heart transplant. So I’m going to start off with a list of some of the bad things that have come out of this trial, then some of the good.

So here we go!

THE BAD

·      Medications and their side effects.

I have to take medicine three times a day. 9 AM, 9 PM, and again sometime

after 11 AM and before 7 PM. I will have to do this every single day for the rest of my life. Now the medication that I take in the middle of the day will supposedly be taken off , but it has been three years of the same dose and I still have to take it.  I take about 11 pills in the morning, 2 in the afternoon, and 9 at night. I know it shouldn’t seem like a big deal, but just knowing that I have to look forward to this every single day for the rest of my life really sucks.  Medicine also gives you really crappy side effects. Just this week we had to go into the doctor because my legs kept falling asleep. We found out it was because my migraine medication was at too high of a dose and had to bring it down. When we change my anti-rejection medication dose, without a doubt I get diarrhea for at least a week while my body gets use to the change. Most of the time when I stand up too fast I get dizzy. My hair is getting thinner because it is falling out. A few of the side effects have stopped now that I'm not on Prednisone. I personally call Prednisone the ‘Devil Drug.’ Let me just name some of the side effects of Prednisone: Weight Gain, Glucose Intolerance, Low White Blood Count (No leaving the house), Bone Thinning, Easy Bruising, Mood Swings, Insomnia, and Acne. Just what every teenage girl wants right? I have to take the ‘Devil Drug’ each time I go in rejection, which can happen at any point throughout my life.  Yay.

·      Friends… or not friends?

At the begging of all this it seemed like everyone wanted to be a part of everything that was going on, and please, don’t get offended by this. I am just telling you what it feels like to be in my shoes.  But now, I have nearly no one (friends) left in my life that are still willing to work through the struggles of my transplant with me.  I have no contact with 90% of the people that were there at the start.  Part of this could be that I had to move away from home for a about 6 months during 7th grade, and that I have not been able to return to school full time, and I am not blaming anyone for this or telling anyone to do otherwise… It just sucks. And going through this I feel like I have matured so much and been around adults most of the time, so that when I do go around my friends it just feels different.  Hopefully going back to school full time in a month will change my perspective on this a little bit.

·      Getting tired

You would expect some fatigue the first couple months after recovering from a heart transplant... but you would not, three years after, still be expecting to go to a day of school and come home and sleep for two hours. Or go to the beach for a couple hours and have to sleep ten hours a night plus sleep on the beach to be happy enough to enjoy the trip. I guess what I’m getting at is the tiredness of the transplant does not go away, it just lessens, and it’s just something you have to learn to deal with.

·      What about the future?

Let’s not sugar coat it; my life is not expected to be as long as any of yours is.  But there’s always that nagging in that back of my mind of how long? Why am I doing all this work to get through high school if I might not even get the chance to finish it? Will I make it to college? Will I ever get married? All these questions can go through my mind as many times as they want to, but the thing is, I will never know. I will not know until it happens, so they are pointless things to think about, and pointless to worry about, and pointless to ask. So I put it in God’s hands, and I go through high school, and I work for college, because what else is there to do?

THE GOOD

    The realization of how important family is

I know we have said this many times in the last three years, but I cannot express this enough. When I had my cardiac arrest we had to move up to Salt Lake away from Brittany and Brock for 5 months. This is one of the hardest trials we have encountered. We are also very close with my grandparents and cousins that live in St. George, during those 5 months we were stripped from seeing them as much as we were used to also. BUT, since we’ve been making frequent trips up to Salt Lake we’ve grown closer to our other families that live up in Salt Lake, and I could not be more grateful for the chance to see them more often and help those relationships to grow.

·      Driving to Salt Lake

My mother is going to kill me for putting this on here, but I truly do like driving up to salt lake every so often. Maybe it’s because I sleep most of the drive, or maybe its because spending four hours in the car with a person you love while listening to good music isn’t so bad after all.

·      Primary Children’s Medical Center

Oh goodness where do I even begin? The house on the hill, our second home.  So many friendships have started there. I could tell you all the memories I have from Primary Children’s, I could go on and on for hours and hours on how that hospital has made the darkest years of my family’s life just that much better. I could tell you all the miracles that that hospital has performed for me. But why would I right now, in this short paragraph, when my whole life is possible because of the work Primary Children’s has been able to do for me? It’s because of their staff that I am here, sitting on my couch. The doctors we see at clinic have put more hours into making me healthy than I can imagine. I just cannot even put into words how much thankfulness and awe I have for what this hospital has done for me the last three years. I could not ask for a better place to get taken care of. Thank you doctors, nurses, and patients that I have grown close to because of Primary Children’s. I could not have done it without you.

·      Having new experiences

Now these experiences aren’t always good, they may include learning what it feels like to have a PICC line put in with no sedation, or getting shots everyday for two weeks by your family members, but still, necessary nonetheless.  The experiences that come out of having a heart transplant will be like no other experience any other person could ever have. From holding my own heart, to meeting other heart kids, speaking at Primary Children’s fundraisers, even seeing my new heart on the echocardiogram machine. There are so many things that are just simply breathtaking that I get to do and be apart of now.

When I had my cardiac arrest, my heart stopped for 15 minutes. Many of you know what happened in that time period, and if you don’t, click here http://Abby's near death experience That experience alone makes everything I have gone through and everything I will go through for the rest of my life worth it. No matter what happens throughout my life, I know that what I saw and what I heard that night in the hospital was real. And that’s all that really matters.

So for the most part I am a pretty average 15 year old girl. In fact, when my mom told me about her idea for this blog post I thought it was a really stupid idea because I'm just normal,  but after nagging me for a month and a half I decided to do it. We have our ups and downs, but in the end if I had the choice to go back and change what happened on May 18th, I would not. Too many blessings have come out of this trial. 

Michelle

For the most part, day-to-day life with Abby is very similar to any kid.  She still has to take her rejection meds, and some others two times a day, exactly 12 hours apart.  Abby is still on quite a few medications, but they're totally helping her.  We've finally found a medication that helps with her migraines, so that's awesome!  I spend lots of time making sure that she has all of her medications ordered on time and that they're ready for her to take each day.  She could probably do this on her own, but I don't think she's quite ready for that.  I deal with many prescriptions and 2 different pharmacies and they all need to be refilled at different times.  It's time consuming, but just part of her life now.  I'm impressed with Abby because she has never missed a dose and is rarely late.  Which is good, because once I heard that if she stopped taking her meds, she would only survive for about 3-5 days.  Not good.  She will be taking the majority of these medications of the rest of her life.

As far as appointments go, if everything is looking good, and Abby is feeling good, she only has to go to clinic at Primary Children's every 3 months and she has a biopsy once a year to make sure that she's not in rejections and to look at her arteries.  Not too bad, we can do that!  She usually ends up seeing her pediatrician in between those times for different reasons though.  Her next clinic is on August 3rd, right before we go back to school.

Abby only has a few restrictions.  She's shouldn't swim in pools that aren't kept up very well and hot tubes are a big no!  Lakes are questionable as well.  She can eat most foods, but no grapefruit or pomegranate.  We're pretty careful about restaurants we'll eat at, and buffets aren't' the best idea.  She can travel wherever she wants, but she struggles with elevation.  For some reason, probably because of her pulmonary hypertension, when we're in higher elevations she has a hard time catching her breath and it exhausts her, so we don't go up very often. She feels great at sea level, so trips to the beach are always a bonus (I love this too!!!)  For the most part, she just a normal kid!  School has been a little bit of a challenge for Abby.  Last year, she did a lot of her classes online because she was missing so much  school the year before because she got sick a lot.  This year, she's going to try to go back to school full time.  I'm so happy about this, I think she really missed the social life.  That's so important especially now that she's going to be in high school.  I'm praying so hard that things will work out for her this year so that she can stay in school with her friends!  She's still pulling A's and B's, but it's harder for her now than it was before her transplant.  It's probably harder now because she missed a lot of her 7th and 8th grade years, but after doing some neurological testing, we found that some parts of her brain were affected a little bit when she was having CPR for 15 minutes, as well as when she was on bypass.  But, it's nothing too serious.  She has some strategies now that help with her memory, learning, and focus.  Abby works hard in school and is very determined to be successful.  When she graduates from high school she's planning on going to college and eventually become a psychiatrist or counselor of some kind.  But, who knows, she's still pretty young to make these decisions.  Like I said, she's just a normal kid.  Yes, she has a lot on her plate and lots of things to think about and worry about that most kids her age never even think about, but she's adapting and handling things very well.  She is definitely amazing in every way.  I look to her and her strength daily, she's very inspiring to everyone that knows her.

As her mom, I've learned to deal with a lot of the stress that comes with having a medically fragile child.  I know that a heart transplant is not a fix, it's just changing one set of problems for another, but Abby is alive and thriving, and for that I'm so grateful.  There are some facts about heart transplants that are always in the back of my mind.

Approximately 80 percent of heart transplant recipients survive the first two years post-transplant, according to the National Institutes of Health (NIH). Long-term rates are generally lower, but are still encouraging. About 70 percent of patients reach the five year mark after a heart transplant and 50 percent live for 10 years or more with a donor heart.  The average is 10 years, but we personally have a friend that has lived over 20 years with her first heart.  We also know kids that are already on their 2nd heart and it's been less than 5 years.  Not knowing is hard.  We just don't know what to expect.  There's a good chance that Abby will need a new kidney someday as well as another heart, her medications are just too tough on them.  But these are all things that we're not going to focus on.  The best thing we can do and that we try to do is to live day-by-day and remember that every day is a gift.  

Some things are harder than others, like on Mother's Day when Abby said to me, "Probably some day, this day will be really hard because I can't have kids of my own."  This is true, Abby can't have kids.  Not only because the anti-rejection medications she's on can cause multiple birth defects, but also because she has a 50% chance of passing on her cardiomyopathy.  This is a hard things for both Abby and me, but we'll worry about it when the time comes.  Who knows how things will change before then. Another hard thing is that I also still like to have my kids close by and I often worry about getting the call that something has happened to one of them.  I think that this is one reason it's been extra hard for me to have Brock in Florida on his mission.  I worry, a lot, that I'm going to get a phone call that he's been in some kind of an accident there.  I think that this is probably a common problem with anyone that has received a phone call similar to the one I did on May 18th, 2011.  That worry is real and it's always there.

Overall, I've learned to have faith that things will happen as they should.  It doesn't do me a whole lot of good to worry or fret, because things are going to happen anyway.  We have learned to expect to have problems along the way, that's what happens when you have a new heart.  There are going to be many highs and many lows, we just have to take them as they come along and roll with them.  This made me laugh while writing it because it's easy to say this now because we're on a high, things have been good and stable for a while now.  Hopefully, I can remember this when one of the those lows hit too.  We are grateful that Abby is doing so well right now, but we know not to expect it to always be this way, and we're good with that.  That's a life we can handle.  So we'll take advantage of these good days as much as we possibly can!!!