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!