Pills, Pills, and More Pills

The last time I wrote, it was a day before my three month baseline appointment. Everything went great during that appointment - the biopsy showed no rejection (!) and the doctors showed us the images from that cath compared to caths done on my previous heart where the arteries were closing off - the difference is astounding. From there, they planned to start a new medication, increase another, and would decrease the prednisone at my next clinic appointment.

So, that has been the major thing I've been working with lately. So many medication changes, which then all require multiple blood draws to check and re-check levels. The day of the cath, my magnesium level was low so they added to that and started Rapamune - another anti-rejection medication. I had a blood draw a week later and the Rapamune was low, so they increased it, and then had another blood draw this week - still low, so they increased it again and want to check it next week. But this week, the magnesium was too high, so they decreased that again. Phew! It's quite the task to keep track of all of them. Definitely a balancing act.

However, since I had no rejection at the last biopsy, they came down again on the prednisone. I came home from the hospital on 40 mg every day, and am now down to 12.5 mg per day. I can't wait to be off of it completely - saying it is a nasty drug with awful side effects is still an understatement - but hey, every little bit helps. Also, since they started the Rapamune, they have decided to completely stop another medication called Myfortic. I was taking EIGHT of those per day, so that significantly decreased my morning and evening piles! ;) Crazy to think that I came home from the hospital on 44 pills per day, plus a central line requiring IV medication three times a day, plus two different insulin regimens, plus pain medicine. FOURTY-FOUR. Hard to wrap my brain around the fact that that was not even four months ago! I am currently down to 26 pills per day, don't have the central line anymore, still on the insulin, and rarely (if ever) take any pain medicine. It's almost been cut in half!

Anyways, other than all the medications that each have their lovely array of side effects and still dealing with the steroid-induced diabetes, I am doing great! Feeling great and trying to do as much as I possibly can. I am still going to cardiac rehab, and plan to do a 5K with the rehab team in a couple weeks! I am looking forward to that. I will continue to have blood draws almost weekly to make sure everything is at the right levels, and have another biopsy in two weeks. Praying for continued progress! :)

Cath & Biopsy on the Horizon...

Hi everyone! It's been a while since I've written anything on here and thought I should give you all an update. For the most part, I have been feeling great! I continue to get stronger each day and am recovering well. Heart wise, I feel so good and full of energy - and have NO chest pain. The only pain I still have is from the incision, and they've said that it will heal painfully slow because of the amount of steroids I am still on. It is amazing the difference in the way that I feel now compared to before my transplant. At one of my recent appointments, one of my doctors showed me a picture of my old heart and the arteries that were closing in it. At every heart catheterization (a procedure where they check blood flow in your coronary arteries and the function of different parts of the heart) I was always told that they were narrowing and closing off - but at a slow and steady rate, and that I had over 50% still left. It was clear that the ends were completely closing or already closed off, and that is why I was experiencing so much chest pain before this second transplant; but I was always told the middle of the arteries still looked okay.

One of my doctors showed me the pictures that they took after they took out the old heart. Come to find out, one of my main arteries had less than 5% of an opening left. They weren't able to see this in any of my procedures because they weren't able to see a 3-dimensional picture. It is so scary to think that that artery could have completely closed at any time. It is truly another testament of how incredible it is that I received my gift so quickly - God knew that my time was running short without getting another heart. I know I've said it here before, but my doctors had warned me to be prepared to wait a year and a half; possibly even two years before there would be a match. Knowing what I know now, we all know I wouldn't have lived that long. Absolutely a miracle and an answer to so many prayers! I am certain I have a few guardian angels watching over me. :)

I have my three-month baseline tests tomorrow morning, bright and early. This will include a right and left heart catheterization, a biopsy to check for rejection, an angiogram, chest x-ray, echocardiogram, and blood work. I can't believe it has already been three months since my second transplant! Time has flown by. These tests will give them a good picture of how my heart looks now, so they can keep a close eye on things to try to prevent CAV from developing again in this heart. I'm not looking forward to tomorrow, as they will go through my groin; which is very painful for at least a few days afterwards. But, I am so grateful to be doing as well as I am, and I keep telling myself that these follow up procedures and tests definitely beat the alternative! I am here! As always, your prayers are so appreciated, and Curtis and I will keep everyone updated!

A Hike - I Did It!!!

I had to post about this - yesterday, I was feeling a bit better, so I wanted to get out and enjoy the day - especially after being cooped up last week when I was feeling so awful. I decided it would be fun to try a hike since there are so many beautiful trails here in Utah. I looked up easy hikes, because let's be honest - I needed something that was more like a walk, not a hike, to start with! I read that Cecret Lake up Little Cottonwood Canyon was an easy, popular hike, only 1 mile to the lake and 1 mile back, and that it was family-friendly and kids could do it. I thought that would be a good one to try.

Ok, so maybe it is easy for the average person, but for a girl who is only about 2 months out of a heart transplant, it was a workout! And hard! And steep! And rocky at parts - which wasn't easy with how shaky I still am. I kind of need solid ground, or I'm a wobbly mess! Nevertheless, it was an adventure throughout. From finding the actual trail, to seeing two moose, to trying to beat the storm and getting rained on, to dealing with low blood sugar while we weren't very well prepared; and to actually accomplishing making it to the top. A mile up a canyon, where you are gaining hundreds of feet of elevation is A LOT different than a mile on the treadmill at cardiac rehab. Duh - I should have known that! I had to stop several times throughout, but Curtis was the best motivator and made me believe I could do it. He has been my biggest cheerleader throughout this entire process, and I am so grateful to have him.

All in all, it was a lot of fun and it was the best feeling reaching the top and knowing I accomplished it. Like I said, easy; and most likely looked over as nothing to the average person, but for me - who was getting to the point of not being able to even walk to my mailbox and back without severe chest pain, it was a huge accomplishment and I am so grateful to be doing so well this soon after transplant. Like I've said many times, this is not the typical recovery. Now, I just hope I didn't over do it and start to feel lousy again, because it was a lot harder than I thought it would be. But so far, I am still feeling pretty good! I can't wait to try more walks and hikes and build up my strength and stamina. This gift is giving me my life back, for the second time! Nothing short of a true miracle.

The beautiful wildflowers on the way up!

We saw two moose - a bull and a cow!

 

 

We made it!!!

The Good and The Bad

I had another biopsy yesterday, and there was GREAT news! I am back down to no rejection! The doctors said that the biopsy could not have looked cleaner, which is so great to hear. I am so happy, and this means I can continue working on getting stronger every day. Or, typically, it would mean that. However, I haven't been feeling very good for about a week. I have been tired, feel weak, feel like I've lost most of the energy that I always talked about, and have been experiencing severe pain in my chest. Not chest pain like I was having before my transplant that came from the heart, but more muscle and bone pain from my incision. My actual sternum hurts so bad and I can't seem to find any comfortable position that helps. My blood sugars have been out of whack this past week as well - higher than usual, and then all over the place once I take insulin. Overall, it's just been a strange week.

Of course, like I said, I am so happy that I am not in rejection, but I was almost expecting it going in to my biopsy yesterday. Rejection would have been an explanation as to why I am feeling the way I am, and it would have given me a reason. Now that I know I'm not in rejection, I don't have any answers or reasons as to why I am feeling this way. My medication levels all looked good - even the Prograf! It was incredibly high for over two weeks, they brought the dose down, then it was too low for over a week, and now, when I'm feeling the worst, they say it is perfect! It makes no sense to me.

They did an x-ray yesterday to make sure nothing had come loose in my chest and that nothing was wrong with the sternum, and they said everything looks good there as well. All I know is that it doesn't feel right, and I woke up this morning with it hurting even worse than the past couple of days. To me, it feels worse than right after the surgery, when it was freshly broken, and even taking narcotics doesn't seem to even take the edge off. I am ready to be feeling better and want to get back to rehab! I haven't made it to rehab at all this week because of the pain. It is so frustrating to not know what is going on; and I think it makes it even worse that I was doing SO well, with such little amounts of pain or setbacks, and feeling so good. To go from that to what I'm experiencing now has been rough. I have called the surgeon this morning to see what he suggests or if he wants to run any more tests, and until then - I could use all the prayers and well wishes I can get!

Fun With Visitors

It has been another busy week, full of appointments, rehab, and more visitors! Last Friday, my cousin Christianna came to visit from Boise. We have always been close, the closest of all the cousins on my mom's side - so I was super excited that she was able to finally come! She is my Aunt Connie's daughter, who I've written about in the past. She is just like her mom in the sense that she kept me going, and we didn't rest! We are all the same that way...and when we get together, there's no time for stopping! 😉 We had lots of fun shopping, doing crafts, and spending time together and with my sister and her little family. I don't know how we managed to go all weekend without getting more pictures, but here's a couple...

Our patriotic fruit pizza we made one night - not the best picture, but again that's all I have! 

She left, and my grandparents came the next day to visit. They haven't ever been down to our house before, so that was great that they were able to make it, especially when my grandpa has back and shoulder issues, so a road trip isn't easy. It was so good to see them, and they took us out to dinner two nights in a row! We were spoiled and I splurged lots on my heart healthy diet. 😉 Lol. 

Out to Texas Roadhouse with Adrianna, Anni, and Benn, their only great grandchildren so far! 

Anni and Benn with their favorite - Uncle Curt!

I am, as always, so grateful for the wonderful family I have and for everyone that has taken the time to come from out of town to visit and help take care of me since my transplant. I am one blessed girl and Curt and I could not be more thankful for all of love we've been shown! 

An Update on the Past Week!

I know I sound like a broken record, but I truly just can't believe how well I am doing and how great I am feeling. I am so blessed to be doing this well, this soon after transplant, and my doctors continue to be amazed at my progress as well. I realize how much of a miracle this has been - every aspect of it. It's overwhelming to think about and I thank God and my donor families every day for the blessings I have received.

As I've said before, this is not the typical recovery from a heart transplant. With my first, I had many complications, severe rejection, reactions to the countless medications, and was in and out of the hospital for the first couple of YEARS after my transplant. With the amount of medications you are put on after a heart transplant, some of them lifelong; and the strength of those medications, there are bound to be side effects and reactions between them. I think, however, because I had been on several of them for the ten years since my first transplant, that it wasn't as much of a shock to my body as the first time around or as it is in a typical recovery; which has worked to my advantage this time around. I truly just have so much energy and feel so good.    Going from being out of breath from walking to the mailbox to feeling good enough to be able to work out and just go all day is an indescribable feeling. 

I had my appointment with the surgeon and he said my sternum wasn't fully healed, but that is normal with the amount of steroids I am on that can slow the healing process. So, I was cleared to drive minimally (basically, if someone else is around that is able to drive, they should, but if I am alone I can. I just have to be smart about being in lots of traffic, or not being on the freeway, etc.) The concern with that is if I were to be driving and get in an accident and hit the steering wheel, my sternum wouldn't yet protect my heart with it not being fully fused back together. He also told me I can start using my arms a little more around the house, but not yet in rehab and to still be very careful lifting them above my head or lifting any weight. So, that's been slow, but I again can't complain, especially considering how well everything else has been going. 

I also had a biopsy this past week, and there was no change! Still slight rejection - not a perfect 0 - but not enough to worry about or change any meds. I hope to get back to a perfect 0, and that is the goal, but they consider slight rejection normal so I will take what I can get! 

Unfortunately, one side effect that I can't escape from is that I have still been incredibly shaky, which is caused by a combination of two of my meds - Prograf and Prednisone. My Prograf level is supposed to be at a level of 12-17 in my blood, but mine has been at 29 for 3 weeks, even with decreasing the dose twice. That explains why I am so shaky, but it is also dangerous and it needs to come down, because high levels (especially that high) can cause damage to the kidneys. That's the last thing I need! So, they lowered it again and will check my blood next week to see where we are at. It's a balancing act, and for at least the first year I will have to continue having weekly or bi-weekly blood draws to make sure everything stays stable. 

Also, people tell me all the time not to over do it, and I know I have to remember that I'm still recovering from the actual surgery, but heart and stamina wise - I truly feel so good and feel like I could just keep going and going. And that's what I do. Since I last posted, I've had such a busy week full of a birthday party, getting together with a close friend to go shopping, a family get together for Father's Day, getting out to the golf course, family passing through town and then going out to breakfast the next morning, going out to a movie with family and then another birthday dinner, my biopsy, my cousin getting into town, more shopping, spending time with my sister and her kids - and on top of all of that, my appointments and cardiac rehab! Makes for a very busy me, but I love that I have the energy to do all of that and can't believe I am able to keep up with all of it less than two months after my transplant. I do know there is a balance this early as I need to heal physically, but I am also a firm believer that life is what you make of it. Even when I was getting sicker by the day, I still did everything in my power to have as normal of a life as possible and enjoy it. If you've been chronically ill your entire life, or even if you are diagnosed with something suddenly, you have two options. You can choose to sit around and feel sorry for yourself or you can choose to play the hand you've been dealt and be grateful for what you do have. Sitting around and stewing is not going to change the diagnosis, so why do it? Of course I am not perfect by any means, and of course I have my days where I wonder why me or why I was given this life, but who wouldn't? And then I am reminded that my struggles are what made me into the person I am today. I was given this life because I'm strong enough to live it. I was given this life to teach me something; and it has taught me so much. To be grateful for the little things, that the petty things are not worth the worry, and that often times while we are asking God to change our situation, he has put us in that situation to change us. Combine that with the fact that I am just not a homebody and I go stir crazy, and the fact that I feel good enough to go all day, and that equals being out and about; getting back to the life that I was lucky enough to continue. 

My cousin, Christianna, is here this weekend from Idaho and we've already had too much fun. I'm so glad she is here and we get to spend the weekend together and I am grateful for her help as well. Then my grandparents are planning to come right after she leaves, so I'll continue to be busy! Can't wait to see them either! 

This was a picture from the week - out spending time with my Curt on the golf course! 💙

Still Truckin' Along...(And A Movie!)

It's been a while since I've posted and I thought I'd give you all an update!

I am still here, still kickin', and still keeping very busy! I am so grateful to be feeling so good, so soon after transplant and that things are still looking up for me. I am now going to clinic once a week, and biopsies are every other week. Even going from a biopsy every week to every other week was huge and is such a nice break. That will continue to spread out more and more over the first year after transplant; assuming all biopsies come back clean and without rejection. Of course, any rejection is a setback and that slows down the whole process.

Even though I only have clinic once a week, I'm still at the hospital at least 3-4 days per week for cardiac rehab. Like I've posted about before, they continue to be amazed at the progress I am making there and continue to tell me that they have never seen a transplant patient do what I'm doing this soon and this consistently, which is so awesome to hear. Today, I had clinic and then did rehab afterwards, and I did 35 minutes at a 2.5 grade and working up to a 3.3 speed on the treadmill, and then another 30 minutes at level 5 intensity on the NuStep machine, which is a stepping machine with resistance. I am still not cleared to use any upper body strength or lift my arms above my head, so I am definitely ready to get that clearance so I can start building my strength back in my upper body as well. It's amazing how weak you become when you are unable to use those muscles for so long.

My two biggest complaints right now are just the fact that I am SO shaky and the pain from the actual surgery. I am still having a lot of incision pain and am just so sore still. Being so shaky makes the simplest tasks so hard - and again, you don't realize something until you can't do it! Eating, writing, even typing this is made so much more difficult because of the shakes. I had my blood drawn this morning at clinic and they just called though and said that my Prograf level was extremely high, which is one of the medications that causes me to be so shaky, so that could explain why it has been extra bad in the last few days. They told me to decrease the dose and they will check it again to see if it is more in range at next week's appointment. Other than those two things, I really am feeling great and still have so much energy! It's pretty remarkable how well I feel and how much I do already when you stop to think about it. I don't ever remember feeling this well, this soon with my first transplant, but I also had a lot more complications, rejection, and reactions to the medications with the first. I've been extremely lucky this time around, and know just how blessed I am.

On a side note, Curt took the day off today to take me to my appointment this morning with the heart docs, then stayed with me during rehab, and we had some time before another appointment this afternoon, so we caught a movie! I still have to be very careful in crowds, but on a Thursday afternoon, there was no crowd! We were actually the ONLY ones in our whole theater. We went and saw Pitch Perfect 2 - which I had been dying to see but obviously couldn't when it came out! So funny. It was great to just be out of the house and enjoy a little date with Curtis!

The puffiness in my face and body is still in full swing from the prednisone. Not a fun side effect at all, but like I've said, I'll take that over an unhealthy heart - I have to pick my battles! I just have to remember that it is temporary, it will go away with time. I am here, and that is what matters!!!

A Letter to My Donor (!)

How do you say thank you to someone who saved your life? Who gave you the opportunity to have many more precious years to spend here; to spend with your husband, family, friends - to have a chance at someday becoming a mom? Saying thank you for the gift of life is not easy to put into words. The gratitude I feel to both my first donor, Taylor, and his family; as well as my second donor and her family is indescribable.

That being said, I sat down and gathered my thoughts and got the donor letter written. This is a somewhat controversial topic in the heart transplant world. There are people that say to write right away - the donor family needs to hear how grateful you are for their gift; and there are people that say not to write - that you have to remember the donor family is still grieving and it may be too hard for them or they may not want to hear from the recipient too soon. Everyone is different though, and sometimes it is too hard for the recipient to write as well. It's all part of the process.

For me, I tried to put myself in their shoes. If my mom's organs would have been donated, I would want to hear how it saved someone else's life or benefitted someone else. I'm sure it would be hard, and I don't know how early I would want to hear, but I would want to know the good that came from the passing. You see, the first several letters have to be very vague - I am able to say my name is Cassie, but not able to tell them my last name and am unable to tell them where I live or any identifying information; and their rules are the same until both parties agree to know more about the other. Right now, I know nothing more than my donor was a female, in her late teens. I don't know what state the heart came from, what happened, or anything about her or her family. I actually only know the information I do so that I could write a letter - they tell you so you know if you are writing to parents, siblings, a spouse, or children of the lost loved one. The letters then go through Intermountain Donor Services and through the social workers of the hospitals where her and I were. The social worker will call the family and let them know that there is a letter from the heart recipient, and they have the option of even opening it, or deciding they want it but it is too soon, or whatever they choose.

I decided I would much rather write the letter, and have it there for them to decide their next step. I would rather have it there too early and they don't have to even open it, then not write and have a family somewhere wondering why they haven't heard from the recipient of their loved one's organs. As I've made pretty clear, I can't explain how grateful I am to be here, and there is not a day that I don't thank God and my donor families for my miracles. I don't take things for granted. I take time to enjoy the simple things in life. Going through something like this not only once, but twice, puts a whole different perspective on life and what is important. I want them to know how much their gift means to me and that I will honor and take care of her heart, just as I did Taylor's.

Of course, I am anxious to hear back, but I am prepared to wait. I know it's early. It's just human nature to be curious. I have so many questions. I want to know about her. I want to know about her family. I want to know what happened. I want to know if she was an athlete like the doctors and therapists keep saying. The list goes on and on. I am so blessed to have the relationship I do with Taylor's family and to have gotten the response of acceptance and love immediately. They have been nothing but incredibly kind to me, and even when they found out that I needed a second transplant, a huge weight was lifted off my shoulders when they understood and responded with love, prayers, and again, nothing but kindness. That is lucky, and I recognize how lucky it is. I don't take that relationship lightly and I absolutely don't take it for granted. I am so blessed to have them in my life. However, it doesn't always happen that way. I know of many people who never hear back, never learn anything more about their donor - and that is unfortunate, but it happens...and I have to be prepared for that. Until then, I continue to pray for both of my donor families every day, and they are constantly in my thoughts. I hope that when this family does decide to read my letter, it brings them even the slightest bit of healing and peace to know the gift they have given me.

Getting Stronger Everyday!

Just an update for all of you - I am still home and feeling great! I have so much energy throughout the days. My last clinic appointment was Monday, where they checked all my labs and everything looked good, except my Prograf level (which is one of the immunosuppressant medications) was high, but they weren't going to lower the dose because it wasn't as high as on Friday at my biopsy so that means it is coming down. I will have labs drawn again tomorrow, where they will decide if they need to lower the dose. Prograf and Prednisone both make me so shaky. That's really one of the only issues right now is how shaky I am and how hard it is to do anything - especially anything detailed - with my hands shaking how much they do!

I am continuing cardiac rehab and making progress each time! They are shooting for three times per week, but this is only my second week of going. They start me very slow, but either increase time or intensity each session. Their goal is to slowly work up to 30 minutes of high-intensity cardio each time; and it is so crazy to think I will be running by the time cardiac rehab is over! I've never really been able to run my entire life. I couldn't do sports as a kid because of my heart problems, I never took PE in school because of my heart problems, and even just trying to be a normal kid and run and play outside often times ended with a trip in an ambulance. Then, being at a children's hospital for my first transplant, they don't do cardiac rehab because I think they just figure that you're a kid, you're going to be out and active and running around getting in the exercise that you need. But, I was never really taught the correct way to work out after a transplant and what I could and couldn't do. An interesting thing about a heart transplant is the nerves are all cut to take out the heart, and never reconnected. So, a normal person can just start running and stop - I can't. The warm up and cool down is vital in order to not pass out; because I don't have those nerves that the normal person's brain uses to tell the heart it needs to speed up. It is like a delayed response. Sometimes even in the mornings, I have to sit up in bed for a few minutes before I can get out of bed so that I don't get dizzy and risk falling - again, because of the nerves.

I'm sure 30 minutes sounds like nothing to some of you, but when you go from laying in a hospital bed and maybe being able to do a couple laps around the floor you're on for several weeks to trying to work out, you really have to start very slowly. I lost almost all of my muscle mass (not like I had a lot, because I never was able to work out) in my legs from being in the hospital. And, I'm still not cleared to use my arms at all yet...but once I am, I'm determined to get these arms strong!

Today I did 15 minutes on the NuStep machine, which is basically a step/stair machine that you can increase the resistance on. Right now, I'm on a level 3 which I definitely feel in my legs and it gets to be hard work! Then I did 17 minutes on the treadmill, starting at a 1% grade and a speed of 2, and increasing to a 1.5% grade at a speed of 2.5. On the treadmill, I feel like I can do so much more and go faster, but they don't want me to overdo it this early so we just increase each time. I always feel great with increasing the speed, but anytime they increase the grade and make it walking uphill, even the tiniest bit, makes it so much harder for me. They are very happy with my progress and impressed with how much I'm doing this early into rehab. They told me I must have gotten an athlete's heart with how great I am doing this soon after starting! I loved hearing that. Who knows - maybe I'm a runner after all? Maybe I'll get to that point and enjoy it and start running every day! So crazy to think about after living my whole life not being able to do this sort of thing. I am determined to get and keep this heart as strong and healthy as possible!

This was last week at rehab when my sister took me!

Today at rehab when my dad took me - see those feet moving?! :)

I saw this posted at rehab and thought it was pretty good!

So Grateful for all of You!

My sweet family was so kind to start a GoFundMe account for the incoming medical costs associated with my heart transplant. As you can imagine, the financial burden of a heart transplant on anyone is incredibly significant. We are blessed to have good insurance that will cover a lot of the cost of the transplant and hospitalization itself, but there are still many costs associated. All donations will go directly to the incoming hospital and medical bills, the ongoing costs of medication, and expenses associated with the loss of income as I am at home, recovering. Any donation, large or small, is so greatly appreciated. Curtis and I have been overwhelmed by the kindness and generosity of all of you and know we couldn't do this without the outpouring of love, prayers, and support from all of you either. We have also established an account named "Cassie's Heart Transplant Fund" that can be donated to directly at any Mountain America Credit Union location - or, if you're not local, I can get you the information on how to donate. Again, we thank you so much! Your generosity does not go unnoticed!

I have made it so you can visit the GoFundMe page directly from this blog. It is located to the right - click there, and it will direct you to our page!

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!