Tuesday- I had a horrible time trying to sleep. I was so physically drained and restless that I could not fall asleep and just broke down. So the doctors gave me some ambien and shortly after I had a great nights sleep. Although I was rudely awakened at 4:30 am for a lab draw. Then followed by an x-ray and an echo. The echo was neat because they injected me with a dye so that my heart would grow in the pictures. It was extraordinary. In the afternoon they took me to get a device check. If you know me you know that I hate device checks, the feeling is terrible but I did very well this time, no crying and I let them test all three leads. The rest of the night was pretty calm. No chest pain, even when I walked around, and I even got to take a bath. We watched some movies and Dewon cuddled with me, he really is an amazing man, I am so very lucky!
Wednesday- Another early morning lab draw followed by the cardiology fellow coming in to tell me I had lost some weight and was looking ten times better than when I got admitted. They are going to continue the lasix for another day and then try and get me scheduled for a cath tomorrow. So after the cath I will know what they are going to do with me long term. I also had a visit from two men who had already had transplants. Hearing their stories makes me a little more nervous. Neither one had a transplant until they were a 1A status and were both coding and basically dying. One of the guys said his ejection fraction, which is how your heart is squeezing/functioning was only a 3 before transplant. Well mine is 22 so I guess I have a little ways to go...Plus I thought I was already doing terrible due to loosing my independence, being tired and hurt all time. To realize most people are 100 times worse and dying before they are found a heart is not something I am looking forward to. They also stated I have to be mentally prepared for everything I am going to go through, that the transplant fixes one big problem but after there are other problems that come along with the new heart. I think I am am prepared but who really knows. Mentally, I am not going to lie I have bad days when I cry and am so utterly pissed that I am sick. Which according to my grandma I am allowed to have 3 "I feel sorry for my self" days a year. Then other days I am so excited to be able receive a new heart and start a new life that the bad days are just an obstacle. Plus its exciting to think one day I will be healthy enough to be able to chase after our kids makes everything worth fighting for. So all the small things in life like childish petty women, not being able to walk in the grocery store and not being able to drink aren't even worth my time. The things that make me who I am are my family, friends and the wonderful team who took my transplant case three years ago. For that I am truly grateful and know that I will get through this whole thing as a healthy, happier and more humbled person. That's what life is about!
The doctor came in as I was writing this and talked us. He said that they had submitted the paper work for me to be moved up on the list to a 1B YAY!! and they were also seriously considering starting me on the transfusions to help remove the antibodies in my blood so that I would have a better chance of getting a heart and not having instant rejection. So if I get approved to be a 1B and they get my antibodies down I could even get a heart this admission, that's mind blowing! Still this is all in the first stages so who really knows until it happens. One thing that is set in stone is I will be going to the cath lab tomorrow for the heart cath.
So prayer prayer prayers please. A lot going on and a lot to look forward to :) Thank You!
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