In my very first blog post, I talked about my struggle with portal hypertension with esophageal varices, a struggle that I still face to this day. After facing the horrors of my scoliosis surgery, I was told that there was a way that they could eliminate my struggle with portal hypertension. I was baffled once again by the promises that a doctor gave me for a major change in my life. I’d lived with this disease for almost my entire life. I can barely remember a time where I did not have it. They also said it could never be cured. Now I was given the hope that I would no longer have to deal with this. I could eliminate one of the biggest issues in my life. I almost quoted Hawkeye, “Don’t do that. Don’t give me hope.”
The thought of living without ever thinking about my disease again was almost unfathomable. I couldn’t truly grasp the enormity of it. I was told that they could take one vein in my neck and use it as a shunt to repair my portal vein. As a reminder, portal hypertension with esophageal varices is when the portal vein stops working. There is a buildup of pressure which causes bleeding in the esophagus. By repairing my portal vein, the blood flow throughout my body would be restored, eliminating many of the medical complications that I face.
Next thing I knew, it was doctor’s appointment after doctor’s appointment, for pre-surgical testing. It was like déjà vu. Now, since I could not move neck, removing the vein from my neck would be a much larger challenge. This was not very reassuring. Removing a vein providing blood flow to my brain already sounded bad enough, and now it was sounding even worse. Let’s just say I was nervous as hell for this surgery but also very excited by the idea of it. I also had CT scans to see what was going on with the vein. I had my surgery scheduled and I was getting ready for my life to change to once again.
However, as usual for me, things did not proceed as planned. A week before my surgery, I had an appointment with my surgeon. I thought nothing of it, as this is common before surgery. He then told me that the surgery was not a viable option. I had no function in my portal vein for too long, so it was completely dead, and if they created the shunt, my vein would not take because it could not expand and contract. So, the surgery would be pointless. From one fleeting second to another, my life had returned to the original reality that this disease would be with me for life.
But wait, there was more. The surgeon then told me he had believed that there was another option. He had noticed in my CT scan that two of my veins were pinching one of my veins that could cause a difference in pressure, and we may be able to release this pressure and resolve many of my issues. He wanted me to go for a venogram. A venogram involves going into your vein with wires and tubes to measure the pressure of blood flow in your veins. They wanted to do this to see if the veins pinching my other vein were, in fact, causing a difference in pressure. So, you know sounds like a fun procedure, just a normal day for me. After a couple of months of trying to get me in touch with a doctor to perform the procedure, talking with them about the procedure and scheduling I was back at it again having another procedure. One closer to catching them all, as I am a collector. Well surprise, surprise, there was very little pressure difference at all, meaning that I had this procedure done for nothing pretty much and there was still no way out of dealing with this disease for the rest of my life.
Once again, the sense of hope I was given was destroyed in the blink of an eye. So, you may think to yourself, why is someone who is built on motivation and fighting through difficult times telling me a story about his sense of hope being lost repeatedly? Good question. Throughout your life, you will be given the hope that something great will happen. Maybe you get a job interview you are excited about, and you feel you crushed, only to be notified a couple days later they are going with someone else. That hope is now gone, and it may feel devastating, but the important thing to realize is that it’s not the end of the world. Many other opportunities will come your way. Yes, my story is slightly different as the stakes are much higher and the hope for a new solution is a lot grimmer. But hey look at it this way: I am still alive. Nothing about my life has changed. Just the hope of something new within my life has come and gone. Also, for 19 years of my life, I had thought that there was no chance of my disease ever being cured, then in one year I was given two different instances where that would change. Who is to say that one day that won’t happen again?
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