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!