NO REJECTION!!! So very blessed!

Today is such a blessing. I just got off the phone with the team and there is NO REJECTION!!! The biopsy looked perfect! I get to lower my prednisone dose and may possibly get to go two weeks until the next biopsy. This is the best news I could have gotten! It is also exactly one month since my second heart transplant today. Wow - a month has flown by! I am so beyond grateful to both of my donor families for giving me the gift of life. I am so humbled to be here, to be feeling great, and to have so much energy that I didn't have before. It's an indescribable feeling. To top it off, someone very dear to me finally got some medical answers today as to why he's been feeling the way he has. I fully believe in my heart that God hears our prayers and today was an answer to many. I can never thank you all enough for the many thoughts, well wishes, and prayers being said on my behalf! Now time to celebrate the best news ever! 💗

A Day in the Life

Hi everyone! It's 2:47 in the morning and I'm wide awake! Usually I will fall asleep around 11 or midnight, wake up around 2, make myself go back to bed, but then I am up for the day around 4 or 5 at the latest. There have been very few nights since my transplant that I have gotten more than about 4 hours of sleep! But tonight, I haven't even gone to bed yet at all - I just can't sleep! I'm going to be tired tomorrow! This dang prednisone - I tell ya. It does a number on me.

So I figured, I can't sleep...I might as well make another blog post! I thought it might be interesting to see all I have to do in a day now that I am recovering. I attached pictures so that you all could see my giant pill box and all the medications I am on now. I currently take 25 pills every morning and 16 pills every night, plus several insulin shots throughout the day to regulate my blood sugar, and I have to put IV antibiotics into my central line 3 times per day.

Here is a picture of all of my medications that I take. Every week, I load up the pill box with everything I need to take that week. Changes are still constant, because I am going to clinic twice a week and still having weekly biopsies where they check all of the levels in my blood and make changes accordingly. So, we have our handy paper that tells me exactly how many of each pill to put in each day.

All of my current pills, plus my insulin and my glucose meter! Can't leave home without that.

 

Also, since my transplant I have had a central line in my chest. I have a love/hate relationship with the port, because it causes me a lot of pain and feels like it is always pulling, but at the same time it has saved me from SO many pokes. As most of you know, I have a severe needle phobia and get extremely anxious every time I have to have a blood draw or IV or anything. You'd think I'd be used to it by now, but that's not the case. It stems from the fact that I have horrible veins, so they're never able to find one that works and I end up getting 3 or 4 pokes when I should have only had one. That's the entire reason I have the central line, is because my arterial line and all of my peripheral IV's went bad while I was in the hospital. They just don't last in me. Through the central line, I have to give IV antibiotics and flush it every 8 hours. That has been every day since the transplant. So, by 7 in the morning I'm up, I have to weigh myself, take my temperature, blood pressure, and pulse

 and chart it daily, test my blood sugar, take my morning dose of insulin, take my 25 pills, eat breakfast, and do the antibiotics through the IV. Needless to say, every morning is a process! Curtis is actually the one who did my antibiotics every day, and almost every time. He is so great to help and was always up to do it before he left for work and stayed up to do it at 11 at night as well. I am so lucky to have him.

Here's my blood pressure machine, thermometer, and chart that I have to keep track of everything on and then take to all of my appointments.

And last, here is what I put in my line every day, three times a day. A saline flush, the antibiotic, another saline flush, and then heparin! The line is actually scheduled to come out tomorrow, because I've done the last dose of the antibiotics now. Like I said before, it's a love/hate relationship, so I don't know how I'm feeling about it  coming out! I want it out, but then again, I'm still needing labs and medications so often that I don't know how they are going to find veins as many times as they need to. I really don't have very many options at all, and I bruise terribly. I'm pretty sure in the next couple weeks, my arms will go from skin color to black and blue!

 

I don't have an exact typical day, but after I do the morning routine, I still have clinic usually on Mondays, I've now started cardiac rehab three times per week, and then biopsies on Fridays. So I am still at the hospital for appointments at least 4 days per week, if not every day. When I'm home, I've  been crafting like crazy, making thank you cards and gifts, and trying to do what I can around the house. I have so much energy and feel like I can just go nonstop - but know I need to be careful not to over do it. I have to be extremely careful outside of home and avoid crowds for three months since the transplant date. I'm not allowed to be alone for six weeks since the transplant date, so we've either had people in town or local friends and family each take a day to be my personal babysitter, chauffeur, chef, and maid (Ha!). I am not able to drive yet or use my arms much at all. I can only lift up to 5 pounds and am not cleared to raise my elbows above my shoulders. They say usually around the six week mark is when they lift the restriction of not being alone and give you clearance to start using your arms and gaining back your upper body strength. It's crazy how many things you take for granted - such simple things - that you do with your arms. You don't realize until you suddenly can't! We have the sweetest neighbor, who has been coming over almost every day to braid my hair and get it out of my face after I shower. Even that - I can't wash or do my hair on my own because of not being able to raise my arms.

 

The days are so full that before I know it, Curtis is getting home from work, then we cook dinner and spend some time together and it's time for bed! Only, I don't go to bed. Curt does, and I do things like this...write way too long of blog posts in the middle of the night. ;) It really does amaze me the amount of energy I have, though. To think that I'm usually up by 4 and I don't stop until 11 or midnight each day; I am surprised every night that I'm still going! Props to anyone who has gotten through this whole thing - I always tell myself I will make it short and sweet and that never happens. I just have so much to say!

 

Clinic, Thank You Cards, and Rehab

Another quick post to keep you all up to speed - I had a clinic appointment this morning that went great! They drew labs, which they later called and said everything looked good and just how they want it, so no medication changes today. They just kept saying how great I looked, and it was exciting to actually have made it to one of my appointments! Each time they would schedule clinic, I'd somehow end up back inpatient and I'd never see them downstairs in the offices - but today we changed that! 

I gave the whole heart transplant team a card that I had made to say thank you for the wonderful care that I've received since the transplant. I made three of them and delivered the other two to the ICU staff and the staff on the regular floor where I spent over 3 weeks in the hospital! It wasn't much and the cards were so simple, but I wanted them to know how much I appreciate the kind of care I received. 

The best part was that I was able to find TJ, who was hands down the best nurse in the ICU. I don't know what it was, but he had a way that calmed me down that no other nurse could do during those first very rough days right after surgery, where I was so drugged and in pain and had so many tubes, IVs, and wires. I was so happy to be able to give the card to him personally! I made it for them to hang in the hallway on their board, but I don't think it's going to make it there. He said he was going to take it home with him, and I wouldn't be surprised if he did! 😉

I then had an appointment later this afternoon to start cardiac rehab, so it's definitely been a busy day! I am excited to get started with that and slowly work my way up to being able to work out and get my strength back. I'm still not cleared to use my arms or any upper body muscles, but they have me starting on a step bike and treadmill. I'm ready to keep this heart strong and make sure it lasts me a long time coming! 

Small Setback over the Weekend - but doing great now!

I've been meaning to post an update for the last few days, but they have been keeping me busy! And so have I - I don't ever slow down and rest or even just veg in front of the TV. Right now that's really what I should be doing; taking it easy and making sure not to over do it. But, I have never been one that can just sit and do nothing! I have to be doing something and feeling like I am productive or I go stir crazy. I've mostly been doing crafts and projects that I have so many of. So, I'm still sitting and not physically overdoing it, but able to feel like I got something done also! 

Anyways, the strangest thing happened over the weekend. On Saturday morning, I was out with my aunt and my legs started to hurt a little, but not much at all. I kind of just brushed it off as nothing, that maybe we had just been out too long or I was walking too much. After we got home, I didn't notice it anymore and I was fine that evening when I had more visitors over. After they left, I took a bath and they started to hurt again. I went to bed, but around 1 am, I woke up just screaming and crying. It was the most excruciating pain - absolutely worse than anything I've felt since the transplant. Even the amount of pain I was in right after surgery I don't really remember because of all the narcotics I got in the ICU. But even that pain didn't compare. It felt like muscle spasms and cramping, but also felt like my bones were just crushing. I don't know how to explain it, but I suddenly couldn't even stand, let alone walk, without my legs buckling from underneath me and giving out. I tried pain meds, heat, another bath - but nothing gave any relief and I was just miserable. I didn't ever fall back asleep from the initial wake up at 1 in the morning, and by the time 7 hit I just couldn't take it anymore. We called the team and they said we wouldn't have to go to the ER, but to meet them in clinic and get labs drawn. We got there, they saw the amount of pain I was in and immediately sent me to the ER. They drew labs and discovered that my magnesium level was way too low, so they gave me heavy duty pain meds through an IV, and magnesium through an IV as well. Some oral magnesium and increased the dose I take everyday and sent me home. They said it was most likely a combination of the low magnesium level, and possibly even over-exercising and walking too much. They also said that overheating can cause it too, so those baths and heating blankets that I thought were good ideas were actually making matters worse! By the time I was home though, my legs felt completely fine. Like, back to 100%! You'd think maybe they'd be feeling a bit better, but still achy or something - nope! It's like it never even happened. It was so strange, and now I'm totally back to normal. So I'm staying positive, not letting the small setbacks get in the way of the big picture - overall, I've been doing great since I've been able to be home and am so happy it's stayed that way! I had clinic today that I'll make another post about, and they said I was looking great and all of my labs looked good, too. The plan as of now is to continue with cardiac rehab (I started that today, too - more in the next post) every day and then have another biopsy on Friday and we will go from there depending on the amount of rejection there is. Let's keep our fingers crossed for none - that way I can stay home and lower the prednisone dose! Now that would be good. 😊

Aunt Connie - Everyone Needs One

My Aunt Connie came to help with my recovery and to be with me after surgery as a caregiver since I can't be alone for six weeks after the transplant. She came on Sunday and was able to stay all the way until today - Saturday! I am so lucky to have gotten her for almost an entire week! She is incredibly busy back home in Idaho, being a manager of a vet clinic and basically the vet's right hand gal! She also has five acres of land with horses, goats, her dogs, and other animals to take care of, so for her to be able to take a week away from everything was so unexpected, but I loved every minute of it! I also have to give a shout out to the vet, who's name is Kubi, who stayed and took care of her house and animals and yard to make this all possible. He is the sweetest guy and has really been rooting for me as well and sent me an over the top get well gift, too. He goes above and beyond, so thank you Kubi! You are so appreciated too! 

Connie is my mom's sister. We have always been the closest and just always shared a special connection, that has only grown stronger since my mom passed away. She is the closest person I have to a mom, and she makes everyone she knows feel so loved, but especially me and my sister. She undoubtedly is there for all the things she knows my mom would be here for if she was still alive, and does so much for us. Whether big or small, from my sister having a baby to me having a heart transplant, to everything in between - she is there! And for that I am so grateful and just love her so much. 

As most of you saw, she made me the most incredible quilt, too. It is my "Quilt of Hope," filled with inspirational and positive quotes about hope, faith, and love and it is perfect for this journey I am on. She brought me so many little goodies - things to do, things to keep me busy. We had the best time ever working on crafts. I have so many crafts to do! I love crafting and making cute things for around the house. The problem is I want to do them all right away, and need to realize I have months of time to kill. That's the thing about me, is I'm not one to just sit around and watch TV or movies or really rest. I want to be doing something, and I know myself - I'll have 10 craft projects done in a week! 😉 But I loved that about having her here. We didn't stop! We were go go go, nonstop. Always crafting, or finding recipes that I can make now that I'm home, or cooking, or cleaning , or even getting out and about. That's the other thing about Connie - she can do anything! She is amazing at anything crafty (she used to make world-class winning porcelain dolls by hand for a living, to give you an idea.) Can cook anything, create anything - I wish I was 1/12 as good as her! As for getting out, yes I have to be careful, and yes I can't be in crowds, but we never went anywhere crowded and I of course wore my mask and washed and sanitized my hands nonstop. There's a balance. It's good for me to get out, get some exercise by walking, and not just sit around or lay around all day, as long as I'm careful. I loved that she kept me moving and going...and we certainly didn't sit around! I was shocked at how much energy I do have and how long I would last during the days. I still am not sleeping well, so my day usually starts by 4 in the morning; maybe 5 is the latest I've slept. Then I go all day and would be up until 11 or midnight, with some days not taking a single nap! And I feel really good, so it's just amazing I have that much in me this soon after transplant. 

Anyways, then the fact that it just happened to be my birthday while she was here was icing on the cake. She went overboard and got me a birthday gift as well! As if she hadn't already done enough. I was spoiled. I can't thank her enough for everything she does all the time, but especially for all she did while she was here. There are not adequate words to describe my Aunt Connie. She is the most selfless, loving, and caring person I know. The world needs more Aunt Connie's in it. I am beyond blessed to have her in my life, and am so sad she had to leave today; but so grateful to have gotten her for as long as I did. I so wish we lived closer! 

I love you Aunt Connie, and again, can't ever thank you enough for all you've done. You are THE BEST! 

The quilt she made for me! I love it so much. 

Fro-Yo one night as a special treat!

We even made it to my favorite place, Wood Connection this morning before the crowd. Used some birthday gift cards that were already burning a hole in my pocket to get stocked up on crafts and projects to do (all those that I'll have done by next weekend! Lol. 😉) We had so much fun! 

Oh Happy Day! Rejection is better!

So, I had my fun yesterday for my birthday, but it was back to business bright and early this morning for my third biopsy, an echo, blood work, and clinic today. I was nervous, as today's biopsy would be the deciding factor as to whether the re-admission and treatment worked or not. If the rejection was better, I'd get to come home and most likely just tweak a few meds around; but if it was the same or worse, I would be admitted and we would have to see what the next step of intervention would be. 

Even though I was nervous, I was hopeful and went in to it with positive thoughts only. I had to believe that things would be  better, and was ready for some good news! I had the biopsy and met with the doctors and they sent me home, telling me they'd call with the results. We waited all afternoon and finally heard from them - we got that good news! They said the rejection was better! Not perfect, as there is still mild rejection, but they said they were confident that what they did was working, and confident enough to not need to do anything further right now. That meant I got to stay home - I was so happy and relieved! 

I am scheduled to go back to clinic on Tuesday, start cardiac rehab next week, and then have another biopsy next Friday. But until then, I'm so going to enjoy being home and continue to take it easy, get stronger, and make a full recovery! As always, thank you all for sending up your positive thoughts and prayers for a better biopsy - they worked! 

 

The Best Birthday!

As most of you already know from my Facebook posts, yesterday was my birthday and it was the best! I thought I'd just post about it here too, so I have it when I look back on this journey. 

In the days leading up to my birthday, I was still in the hospital, and even if I had the chance to get out before my birthday hit, I had a biopsy scheduled for that day. I had asked the doctors if there was any possible way we could push it back a day, that it wasn't a huge deal if we couldn't, but who wants to spend their birthday at the hospital, sedated, having a procedure that makes them so anxious and has so many factors riding on the results of that procedure? Not me, that's for sure! They kept telling me that they'd look into it, but not to count on it. I had pretty much just accepted that I would have to spend my birthday at the hospital, and that I would just celebrate it another day. Then one morning when I thought I was getting to go home, my doctors came in and told me I had to stay another day. So, that made matters worse, but then one of my favorite doctors said, "And I hear you have a birthday this week. I have a birthday present for you. No biopsy until Friday!" I honestly almost started crying, I was so happy! I did start dancing in my hospital bed and made everyone laugh. 😄

I truly was just so grateful to be able to be in the comfort of my own home with my husband and aunt who is visiting that we could have done absolutely nothing and it still would have been perfect. But I had a busy, wonderful day! I was actually able to get my hair done in the morning, which felt wonderful and gave me a little extra self-esteem. I've been really struggling with how much my face has blown up from the high doses of Prednisone, so to be able to feel like my hair was done and cute, especially on my birthday itself, was the best. I know, little victories that probably seem so silly to all of you, but the little things are the big things to me! I then spent the day with my aunt, took a nap, did some crafting, totally splurged on my new diet and had Texad Roadhouse (one of my favorites, and of course take-out; so I wouldn't be in the crowds) got to talk to the people I love the most, heard from all of you with the sweetest posts, messages, texts, and phone calls, got spoiled with gifts from my wonderful husband and family, and then even had two visits from both my in-laws who brought all sorts of goodies and my sister's cute little family too. Then we even had cake to boot! What heart-healthy, diabetes friendly diet were you talking about? 😉 But hey, it was a special occasion and I'll be right back to eating healthy today. 

I truly am so grateful to even be here, for my miracle, and for my two donor families who have made another birthday even possible. I am so blessed and thank God every day for my many blessings. Here are a few pictures from my day! 

Home, More Setbacks, and Home Again!

Hi everyone! I haven't written an update on here for a little over a week, so I thought it was time to get everyone up to speed again. A lot of the time, especially while I am in the hospital, it is a lot easier to just post an update straight to Facebook and then you all can see how I am doing there; but the down side is that then the blog never gets updated as to what is going on. So, I'll try to be a little better about that!

I wrote last time that after the first biopsy, they treated me with huge IV bursts of Prednisone to try to get my body to stop rejecting the new heart. After several doses, I was then able to come home last Tuesday, the 12th of May. I was scheduled to go back on Thursday for my second biopsy to see if the Prednisone had done it's job and brought the rejection down. As most of you already know, the biopsy showed no change, that there was still moderate rejection, and more action needed to be taken. I was re-admitted Thursday to have 3 doses of a medication called Thymoglobulin, which is even stronger than the Prednisone, in hopes to stop my body from attacking the heart again.

I learned that the Thymoglobulin literally wipes out all of your lymphocytes, which are in turn your immune system. The average person's lymphocytes make up about 20-40% of their total white blood cell count, and at the last check, my level was at .01%! So right now, I literally have NO immune system to help fight off any infections or illness; but they want it that way so that my body stops attacking the heart. That is why it is so strict that I absolutely am not allowed in crowds or around anyone even remotely sick - because I would catch whatever they have automatically. So although it has been hard not being able to see everyone, I so appreciate everyone being so understanding and not coming around if they have any symptoms at all. It will be hard to be pretty much quarantined to home while my immune system is so depleted, but being out is not worth the risk of making things worse!

They ended up doing 4 doses of the Thymoglobulin instead of the planned 3, to really be aggressive about getting that rejection down. I was discharged again today (YAY!) but am scheduled to be back for the third biopsy on Friday. Until then, I am and will be praying hard that this medication worked, that the rejection has come down, and that I won't need any further intervention and can start to lower some of the other immunosuppression drugs that have so many side effects. I don't want to have to find out what the next step is if it hasn't come down.

Right now, I am just SO happy and grateful that I will be out of the hospital without any appointments or procedures on my birthday on Thursday! That's the best present I could have ever asked for. The doctors were reminding me to "please take it easy," not to have too many people over and of course no one sick, and to "just be so careful." I remember thinking, "It's not like I'm headed to Lagoon to get on a roller coaster and go paint the town red!" ;) I honestly will just be so happy to sit on my own couch, in the comfort of my own home with my husband and have a piece of cake!

I know I've posted a lot on Facebook about the visitors that have come and the many special gifts I've been getting. I am so blessed! I can't thank you all enough for all of your thoughts, prayers, and love. You all keep me positive, keep me smiling, and keep me going! Today I am grateful. Grateful for my miracle, grateful for my amazing husband who has been incredible through all of this, grateful for my friends and family that have come from far and wide to help me, and grateful to be HOME AGAIN!

Day 13 - Some Setbacks...

Hey everyone - I thought I should try to post an update today to let you all know what has been going on and that I am still in the hospital. As most of you heard, I had a biopsy last Thursday, and the results weren't exactly what the doctors were looking for. There was more rejection than they would have liked to see, and I was retaining quite a bit of fluid around my heart. They gave me a huge burst of steroids to help with the rejection, which causes all sorts of side effects, including retaining even MORE fluid than I already was. They gave me a medication called Lasix, that helps to get the extra fluid off. That night, I lost over 4 liters of water weight! Imagine carrying around two 2-liter bottles of soda all day, and that's how heavy I felt. The extra fluid just makes me feel miserable, achy, tired, and overall very weak. 

They were then waiting for one of my immunosuppressant levels to come up to a healthy range for me to be able to go home. My prograf level needs to be between 12-17, and it has consistently been right around only 6 or 7, even with an increased dose. Each day, they say I might get to go home if that level comes up, but each day it stays about the same. And now, I have had pretty rough days both yesterday, over night, and today. Because they hit me with such a high dose of steroids and then stopped them immediately, I'm back to having extra water weight on and just feeling crappy, overall. The doctors rounded today and decided to start more Lasix, which will hopefully help me start to feel better once that weight comes off too. Overnight, my blood pressure was high (in the 150's to 160's over the high 90's) so they were worried about that, too. I have been extremely dizzy and tired, and each time I try to get up on my own I feel like I am going to pass out. I also got extremely nauseous last night and started throwing up all of the medication that needs to stay down! Add all of this to the existing incision pain from my chest trying to heal, horrible back pain from being in bed all this time, and pain from the central line in my chest...it's been rough, to say the least.

I also just have to add that Prednisone (the steroid) is NOT friendly. It may work wonders to help get rid of rejection, but the side effects are horrible. My face has puffed up like a giant balloon. I have to remember that a fat face and extra weight on my body are small prices to pay to have a healthy heart, but it is still hard being a girl in a world where everything is focused on beauty. I am blessed to have a husband that thinks I am beautiful no matter what, and I thank God for him every day and for the fact that he would never make me feel any less. The prednisone is known for doing all sorts of numbers on you - makes you irritable, an emotional mess, blood sugars go through the roof causing more changes in your diet and needing insulin, it makes you shaky, and gives you the feeling that you want to crawl out of your skin, which in turn makes it so you certainly don't get any sleep! It is not a fun drug to have to be on - but for a healthy heart with no rejection, that's the price I have to pay.

So, needless to say, I still don't have a discharge date. These set backs have been frustrating, because I was doing so well and having such great days! The doctors were so happy with my progress after transplant, and to think I could have been home last Friday if the biopsy would have been good is hard. I don't know what happened over the past few days that has turned it around; from where I was getting up on my own, walking laps, and feeling good, to now - where I am just exhausted and have to call the nurse every time I even need to use the bathroom! Ugh. I am just trying to stay positive, and remember that the doctors know what I need, Plus, as much as I would love to be home, I wouldn't feel comfortable going home feeling like this - I think I would be too afraid that something might happen. So for now, I'm waiting it out - praying that I start to feel better, or at least get even the slightest bit of relief from some of these symptoms soon. I'm sorry to post an update that seems like it is all complaining - I hate to do that! I will keep my chin up, and as always, I am of course so grateful for this gift I have been given. There are better days ahead - just have to get past these bumps in the road. All prayers are so appreciated, and I can't thank you all enough for keeping me in your thoughts!

                                                     

Missing Mom - Forever Grateful

Missing you on this Mother's Day without you, Mom - but I do know you are the angel that has guided this miracle that has happened within me in the past week, and have been the one watching over me the whole time. I will celebrate with joy that your spirit is always right beside me, even though that doesn't dim the pain of not having you physically here. 

It is also near impossible to put into words the fact that I received a heart only 12 days ago; whom I don't know yet anything about the donor. That heart could have been from a mother who's children are hurting today. It could have been from a child, who's mother is hurting today. Regardless, I am alive because of the most selfless decision in probably the most tragic time of someone's life. Wherever you are, and whatever your story may be, I thank you for the gift of life you have given me and pray that some comfort is found in the fact that lives were saved because of your decision. The mother of my first donor, Taylor, may be hurting today as well, but I want her to know her son gave me ten extra years of life! I don't think one understands the true meaning of how deep gratitude can go until experiencing something as life-changing as this. I am humbled. I am beyond grateful. And, I wish a very Happy Mother's Day to all the wonderful moms out there!

I am Blessed - A Shout Out to the Lundberg Family!

I have been trying to find the right words to express how much the Lundberg family means to me for so long; but yet there are never enough adequate words to describe how much of a true blessing they are and have been in my life. I have been nannying for their family since September of 2012, when Luke, who is now almost 3, was barely 3 months old, and Gabby, who is almost 5, was barely 2. They have been an absoulte God-send and I truly believe that it was God who made the two of our paths meet and who has worked in mysterious ways to keep us together. I worked for them for about a year, and then was accepted for an internship at Primary Children's Hospital, that was to last about 5 months. There was no guarantee of a job offer at Primary's, so we played it by ear and when a job still wasn't available by February of 2014, Jason and Rossanne asked me to come back to their family. There was no doubt in my mind that it was right decision for me at the time, and I jumped on the offer! Its now May of 2015, and I know that going back was the best thing for me. I started to deteriorate health-wise, and there would have been no way I could have kept up with a job at the hospital with how I was feeling each day. Jason and Rossanne have always been SO understanding and beyond flexible with any appointments I would have, or any time I just couldn't make it to work. I can't imagine how hard that was for them to rearrange their own work schedules because of something that was happening with me, but they always did. They always made sure that my health was first and foremost, and never made me feel like I was a burden on them. I am so grateful for them. When I told them I was going to be listed for a second transplant, I immediately knew how much I meant to them. I've always known, but hearing Rossanne's reaction meant the world to me and I knew without a doubt in my mind that they would be there for me in any way possible throughout the crazy ride, which they have. I worried about what would happen when I got the call - as they can't take off excessive days because of my own health issues. It's not like it is a scheduled surgery that you can plan around - I worried that I would literally be there one day, and the next I would have gotten a transplant and started down the road of a long recovery, where I wouldn't be back for several months. What would they do? Find a nanny overnight? They reassured me not to stress and not to worry about it, so I did my best to do just that - especially because we thought it would be so long before I would even get the transplant, and in that case, the kids could have even been in school by then. It was all unknown, but I tried to take it a day at a time.

It was absolutely Jason, Rossanne, and Rossanne's parents (Glafira and Pete) that brought me back closer to my faith and God over the past several weeks. I knew I needed something, someone, to lean on that is bigger than me when I found out I would be going through a second transplant. 1 John 4:4 states that "greater is he that is in you, than he that is living in the world." I started going to church with them, and have loved it since day one. I've been reading the Bible daily and studying the words that speak so clear to me as I face this trial in my life. Rossanne is always willing to talk to me about any questions I might have; and makes me feel like I can be open with her about anything. I am so thankful to her for leading me down this path that will make me a better person, and don't think she will ever know the true impact she has had on my husband's and my life. I read somewhere during one of my days waiting on the transplant list a quote that really hit home for me. "This moment in the middle will not last forever. There will be an end, an answer, and a promise. But right here and now, you have the privilege of journeying with the Lord. Enjoy the journey; for I have found that we come to know Him best in the moments we need Him most. Years from now, when you look back, you might discover that this moment, right here in the middle, was one of the most precious moments of your life. Because it led your heart to His." Now that the "middle" came and went much quicker than expected and I have my miracle, I will still certainly seek Him and bring my heart closer to His in each way that I can.

Needless to say, I have been beyond blessed by God to be in the Lundberg's lives, as I have been blessed to have them in my own. They are not employers, they are not friends - they are FAMILY. I love that curly-qued little girl that I still imagine in diapers and eating ice cream and churros with at Cowabunga Bay. I love little Lukey, who I also still imagine as so small, cuddled up in his pajamas and drinking a bottle - always playing with my hair to fall asleep for a nap. It is so crazy to think about how big they are getting - that Gabby willl be in Kindergarten and Luke in preschool at the start of August. If I had my way, they would stay little forever; but regardless; I will always love them like they are my own. 

To Rossanne and Jason - thank you for everything you have done for me and continue to do. You have been there for me in every way possible and there is no way to explain my gratitude towards the both of you. I love you and love your family so much. 

I got to FaceTime with them today for the first time since my surgery. I think I had the biggest smile on my face yet! I already miss them so much, and can't wait to be back up and at 'em, once I recover, with all the energy in the world! 

Small Steps = Big Leaps!

Physical Therapy and Respiratory Therapy have been working me hard to get my strength back up after such a big surgery. I have a certain amount of walks and exercises I have to do each day, as well as lung exercises to make sure I am fully expanding and using all the air I have in there. The sooner they get you up and moving, as much as it hurts, the better and quicker the full recovery is. I will have several months of cardiac rehab appointments to get that ticker up to full strength, even after getting out of the hospital!

I got the transplant during the wee hours of Wednesday, April 29, 2015. For the first few days, they wanted my body to function as normally as possible, without just being sedated to the point where I couldn't feel anything. I struggled a lot with pain and nausea, and had a breathing tube down my throat and in my nose. Waking up and not being able to communicate what you need, with your hands restrained so that you don't pull out any tubes that you shouldn't, is quite the experience. Here I am, still on the ventilator with several of the lines and tubes that I had right after surgery. 

                                                                 

By the next day, they had me trying to sit up in a chair and trying to walk to the door of my hospital room. As you can tell by my face, it was not fun - but I did it! Once I was sitting back down, it felt like I had just ran a marathon, when instead all it was standing up, walking about 5 feet, and sitting back down.

Each day, I walk a litte bit more. The next day I walked out of my room, turned around, and came back. The next, to the nurse's station with only the support of my walker. 

Since then, I've been making it around the floor without any walker or being held up. The doctors say they are very happy with my progress and that I am right where I should be for the time being. Here are just a few more pictures of getting up and getting around with some of the people I love the most!

Thank you all for the visits and for keeping me going! You all are the best!

THE CALL!

I got into this a bit before on the previous post, so feel free to look there for any inconsistencies. Again, still can't sleep so I am seeing what I can get written up in the mean time. Hey, that's better than just counting ceiling tiles, right? :)

So, as I stated before, I had no information about the donor heart, no ideas to where it was coming from to provide some sort of timeline of when I might head in for surgery, no update on when the Intermountain surgeon from here would be flying out to see the heart...nothing. Just knew that there was in fact a heart, and on paper, it looked like a perfect match. I had everyone come up that could and was willing to keep my nerves at bay while I just waited for the unknown. There were so many raw emotions at that time. Anxiety because I didn't know what to expect or what was the next step, fear, regarding whether or not it was a match - because if it was, here we'd go and I'd be getting a heart transplant a WHOLE lot sooner than I had thought; but also fear that it would be a false alarm, and I would have gone through all of that anxiety and phases of adrenaline, only to be sent home. I am so blessed that I've never had that happen to me, but I do know of several others who it has happened to. Of course, the let down can be almost unbearable, especially depending on how sick you are, but it is important to remember that with this big of a surgery, they aren't going to cut any corners or take any chances. Gratitude, excitement, worry, readiness - those were all there. 

After getting the call around 5:15 pm, getting to the hospital and admitted by around 6:20, and then waiting, and waiting, and waiting...I was finally being wheeled into surgery and saying good bye to my husband and family members. I can't imagine what it was like on the other side of those doors for them, waiting for the hourly updates on the status of surgery. No one wants to be the one on the inside, but there is no doubt in my mind that they all had the harder job. Sometime between 7-8 in the morning, the surgeon called my husband to tell him the new heart was in and was beating on it's own! I can't even imagine that moment for him. 

I of course wouldn't write this without taking a minute to say how incredibly grateful and blessed that this heart went to me. Although I still don't know any details, this had to be a match made perfectly for how fast it came compared to how long some doctors thought I would wait. I was and am honored to know the family of my first donor, Taylor, and hope in time that I am able to develop the same loving relationship with the new donor's family, as well. I pray that during what I imagine had to be the hardest days of your life, you were able to find some solace in the fact that you have now given me my life back. There will be an unmeasurable amount of things that I can do now with this strong heart - things that I would have never been able to accomplish before with the disease. I will honor this heart, just as I honored Taylor's, and its impossible to take the small, simple things for granted once you have been given the gift of life. 

This has been an amazing answer to prayer and has continued to bring my faith closer to God. The fact that I went into the transplant as healthy as I did only means one thing: I will come out of it with a quicker and stronger recovery. The magnitude of this blessing cannot be described. Just remember, if you're in a rut, you're having a hard time, things are feeling like they are spinning out of control - your miracle is coming. That's what I was told, that's what I believed, and it did!

                                                                   

The Most Surreal Week...ever?!

   Finally getting around to posting on my blog - but don't even know where to begin! It is also the middle of the night, IV's running, dark in my hospital room, and my eyes don't do the greatest job of focusing with all the medications I am on. So, just bare with me! :) I'll do my best.

Just a week ago, I was nannying for two little kids that I love like my own - just enjoying the feeling of summer coming and trying not to think of all that was still ahead of me to face. I had a particularly rough weekend right before, coming down with bronchitis and other flu-like symptoms that kicked my already hard side-effects into even higher gear. I usually try to stay as positive and upbeat about my journey to find another heart as possible, but that day it had all just been too much, and had been weighing on me all weekend. What 23 year old wife, sister, daughter, friend - anything - wants to lay around in bed feeling lousy and waiting for a perfect match that may become available in the coming months or even years. It was definitely a hard concept to accept that that was my new normal.

I posted on Sunday night that I was having a bit of a rough go, and so many of you were right there with positive thoughts, prayers, vibes, and encouraging words to lift me back up and remember there was a reason I was doing all of this! That I could do it! That with God next to me, Curtis as my rock, and all of you supporting me from behind, it was possible. On Sunday, you must have all flooded the heavens with prayers on my behalf. I know there are prayers going up in all walks of life, all over the world for me right now, and that in itself couldn't be any more humbling. To know there are SO many of you that are willing to lay your own problems aside, just to ask for help and guidance with my own. I truly can't thank you all enough for the enormous role you have played in this entire journey.

I continued to go about my day on Sunday and Monday. The doctors gave me a pager to carry with me at all times, and they would get ahold of me through that or my cell phone when they thought there could be a match. Well, I don't know if its the luck of the draw or what, but I had only had the pager for about a month, and it had gone off over ten times! Talk about really giving me a heart attack and making me need this transplant even more! :) Every single time it would go off, I would have this sense of panic, and then more of a boy who cried wolf attitude towards the dang thing. Every time, they were looking for a surgeon named Dr. Miller,  and every time, I would explain that I am a patient waiting for a heart transplant, that they must have a wrong number. They'd apologize, and we'd be on our way. The funny thing was that I was getting pretty sick of it going off all the time and giving me these moments where I thought there was a heart, only to have someone say they have called the wrong number. I had a clinic appointment with the heart team early Wednesday morning scheduled to go over what had been going on in the last month or so, and more importantly - to get a new pager!

Tuesday night quickly turned into a blur, Both my husband and I had gotten home from work, and we were exhausted from the week before. We had been busy with yard work, spring cleaning and organizing in the house. We sat down for what felt like 5 minutes, turned on one of our favorite shows to just veg out for a bit, and then my phone rang. It said "IMC - Heart Clinic." Every time my phone would ring with that number, I would just get this quick burst of adrenaline, wondering - could this be it? I answered my phone, pretty much thinking it would be a after-hours automated phone call reminding me of my appointment in the morning. I was WRONG! They told me they couldn't give me much information as to keep the donor information as private as possible, but that I had an hour to get to the emergency room and checked into the Thoracic ICU. I was a mess - flying around like a chicken with my head cut off trying to gather things and think of what I would need. I wasn't prepared! I mean, I don't know how necessarily prepared you can be, as the call will come as a shock and at the most unexpected time no matter what. But here I was told a year to even two years of a wait, and less than a month and a half later, I was getting the call. It was all so surreal. What comes next is what I think is the hardest part. They have you admitted to ICU, and on paper, you'll be getting a heart transplant if all stays as a go; but there is no way to be certain until the surgeon sees the donor heart and determines it is a perfect match with his own eyes. So, we wait, and we wait, and we wait. Huge shout out to Kelsi, my sweet sister in law, who stopped everything and came right up to try to help calm my nerves and keep my mind busy on other things. Also to my Dad and Mary, who got the call and then again had to decide if they should come, or if there would be a chance of a false alarm. They got in the car in Twin Falls, and made it just about 5 minutes or so before the surgeon was coming to have me sign consent. Victoria, my oldest sister, who lives in Oregon, got the next available flight to SLC and was here before I woke up from surgery. Adrianna, my middle sister, was here just as fast as she could be after getting off of work, and my in-laws came quickly as well. Jason and Rossanne, the couple who I nanny for, also came up to see me before I went in for surgery. Thank you all again SO much for being there to keep my nerves at bay. 

More about the call, emotions, and what has happened in the last week is coming soon! I sound like a broken record, but I can't thank you all enough for the prayers being sent up by so many of you! You are all who keeps me going!