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 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 had lived with this disease for almost my entire life. I can barely remember a time when 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: Do not do that. Do not give me hope.
The thought of living without ever thinking about my disease again was almost unfathomable. I could not truly grasp the enormity of it. I was told 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 presurgical testing. It was like déjà vu. Since I could not move my 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 sounded even worse. 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 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. If they created the shunt, my vein would not take because it could not expand and contract. 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 believed there was another option. He noticed in my CT scan that two of my veins were pinching another vein, which could cause a difference in pressure. We might be able to release this pressure and resolve many of my issues. He wanted me to go for a venogram, a procedure that involves going into the vein with wires and tubes to measure blood flow pressure.
After a couple of months of trying to get in touch with a doctor to perform the procedure, talking with them, and scheduling it, 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. I had this procedure done for essentially nothing, 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. You may wonder why someone whose brand is built on motivation and fighting through difficult times is telling a story about hope being lost repeatedly. Throughout your life, you will be given hope that something great will happen. Maybe you get a job interview you are excited about and feel you crushed, only to learn a few days later they chose someone else.
That hope is now gone, and it may feel devastating, but it is not the end of the world. Many other opportunities will come your way. My story is slightly different because the stakes are much higher and the hope for a new solution is a lot grimmer. But 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.
For nineteen years of my life, I thought there was no chance of my disease ever being cured. Then in one year, I was given two different instances where that might change. Who is to say that one day it will not happen again?