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!!!