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!