05/02/2022
I know that it has been a long time since I have written anything here in a long time. Things have been very turbulent. Emotionally and physically, I have been all over the place.
First, I am about to celebrate my 31st birthday!! This would not have happened without my donor! She is the reason that I am still alive today. Her sacrifice has allowed me to continue to be a wife, mother, sister, daughter, and friend to my circle of people. I do know that without a doubt without her there would be no me. So, I am eternally grateful to her and her family.
That being said, the last nearly year has not been a cake walk by any stretch of the imagination. I never could have dreamed that it would have been this hard. Expressing this makes me feel that I am complaining or not grateful. That couldnât be farther from the truth. I wouldnât give up one painful, tear filled, excruciating, frustrating, exhausting, wonderful, God given second I have been given. If you want to hear the real story of how things have been please keep reading. If you are going to be judgmental, please move along.
First off, once I got home, I did not listen to the doctors like I should have. I couldnât just sit and to nothing. I wanted to be up with my family and kids. I felt that I could do things better, just like my controlling self, or I didnât want to be a burden. This led to problems arising. I had a very minor, strange, heart attack a couple weeks after being home. This sent me into the hospital for another week. I honestly thought that I was going to die right there in front of my kids. It was one of the scariest things I have been through. During the time in the hospital and for the next coming months, the doctors have tried to figure out what is wrong with my chest and why it causes me so much pain. In the end they cannot figure anything out. Everything always turns out normal. I have had chest pain but no other incident like this since then.
I have gone through a few rejections since I have been home. Each time it has been caught early and a 3-day stint of 1,000mg of prednisone have fixed the issue. I donât know if it is the rejection or if it is the medicine, but going through that isnât easy. It isnât like on day 3 I am all better, good as new. My energy level is never consistent and I keep finding all the weight that others are losing.
Since October I have had a persistent dry cough and it has slowly become harder and harder to breathe. In November they did a bronchoscopy and found that my left bronchial tube was closing. This required surgery to go in there and stretch it out. However, after 4 of these surgeries, it still isnât helping. The tube itself is getting smaller. Which is making breathing even harder. It feels like breathing from a straw. My doctor then tells me what he thinks is going on. He said that the tube is losing integrity and is becoming âfloppyâ. They ran a bunch of tests and donât know why; however, at the end of the conversation I was told to lose weight. I swear, this is just the backup line doctors have when they donât have an answer. I would have more respect for someone who just said they donât know why something is happening but would do what they can to help me.
I go back to the doctor on Wednesday. I am planning to tell him how hard things have been. So much of the time I feel like I canât breathe. I wake up several times a night in a panic because I canât breathe. Kissing my husband stresses me out because I canât breathe. I canât keep going like this. I really need some kind of help. I will tell him all of this. If he is unable or unwilling to help me, I will be seeking a second opinion.
It is so easy to get stuck on the bumpy part of the road, I do have to make sure I look at the wonderful things that have happened as well. I have been able to go on a couple trips with my family and I was able to fly again! I am tired and it is hard to get there on time, but I need to make it more of a priority to go to church. I feel that my faith is just standing still. I need to water my faith and keep it growing,
This past weekend was my Godmotherâs funeral. It has been nearly 2 years since she past, but my Godfather wanted to wait until a lot of the covid restrictions were lifted. This was so hard to have to go through; however, it was so nice to see people that I have not seen in many many years. Some of them I didnât know but they knew me. They knew my mother and loved her dearly. To reminisce in this way was very cathartic. It also helped just remind me how lucky I am to have the life I do.
So, even though the road has been tough, it is worth the fight. As always, I will keep going and keep fighting.
