One really cool thing that happened before my surgery is what my GI doctor told me. He had come back on Saturday morning to tell me how everything went, but then proceeded to say that he had had dinner with another doctor from across town and they had talked about me. This doctor just happened to be from across town at UNC. My GI doctor asked him about vasculitis and the possibility of someone still having it even if the blood tests were negative.
Well, this doctor that he was having dinner with just happened to not only be from across town, but the doctor who invented the blood test to check for vasculitis as well.
He informed my GI doctor that there is about an 8% of people who still have vasculitis even when the blood tests are negative.
My GI doctor was telling me all this, which at the time was interesting but didn’t really mean anything to me. I am now past surgery, and vasculitis is the only lead I have regarding my health. My lung doctor referred us to the Nephrology and Hypertension department at UNC that also deals with vascular diseases. She said she talked to the doctors there, and they were very interested to meet me.
When I got my appointment information, I saw my Vasculitis doctor’s name. I then realized that this was the same doctor that had dinner with my GI doctor! This vasculitis doctor was probably the best person I could see for my “potential” disease. He is not only an expert in the field, but he also created the blood tests for diagnosing it.
As a Christian, I know that God is always at work in directing things in my life. Except sometimes, it is hard to see His hand. This was certainly the case back in December. I had no idea that I would come in contact with this vascular doctor three months later. It is so awesome to be able to look back and see God’s hand in my life and this is just one example.
Fast forward to March 10, 2016.
I had been looking forward to this date for a while. I was finally going to see a specialist in Vasculitis. I was really excited to see someone who knew about vasculitis and possibly give me a definitive diagnosis. So, on Thursday my mom and I headed out to Chapel Hill, North Carolina.
When I got there, I checked in at registration and then didn’t have to wait at all. I had already completed the preliminary checks that happen at the beginning of an appointment. The nurse then took me down to room 10 and said the doctors would be in shortly.
Mom and I waited for several minutes before the nephrology/vascular doctor came in. However, this was not the vascular doctor I was told I was going to see. I was a little worried, but he quickly said he was there to listen to everything first and then would bring in the head vascular doctor. He wanted to know everything that had happened to me and how long this had been going on. It took about 45 minutes to talk through everything with him.
After a few more minutes of talking, he said he would be back and was going to get the head vascular doctor and relay my story to him. I jokingly told my mom that he would probably be gone an hour. And he actually was gone almost an hour while relaying everything to my head doctor. When they finally came back in, my assisting vascular doctor walked in first then followed by the specialist and an attending doctor from Ireland. When the head doctor first walked into the room, he just stopped and stared at me. In my head, I was thinking:”should I say something; is he going to say something?” Fortunately, he spoke first and just said “WOW.”
He began to apologize to me for all the things that I had gone through and began to ask me some questions regarding my health. He said that based on everything he could say that I have Vasculitis. However, he could not tell me what kind but that didn’t matter because treatment would be the same.
His next words are something that I will not soon forget.
“The only treatment that we have for this is chemotherapy.”
Have you ever heard of someone saying that the room started to spin and time stood still. Well, that is exactly how I felt after he said those words. I felt like I was going to fall out of my chair the room was spinning so bad, and I felt like time stopped as he kept talking. I knew that treatment for vasculitis could be through an IV but not having a diagnosis I never thought about the possibility of it being chemo.
I felt so scared, alone, and relieved all at the same time.
Why do I have to have chemo? I don’t have cancer. Yet, this is the only option. There were so many emotions going through my mind. I was just given a diagnosis, finally. Now, I was given a treatment options.
He went on to say that by doing nothing my insides would basically start failing. There would be a 100% guarantee that I would get worse just like I was before surgery with the masses in my lung. However, there would be an 80% chance of me going into remission. I very much disliked and liked those odds.
He talked about the risks of doing this treatment. He explained that it would be only three infusions. They would be once a month for three months. The dosage for these would be pretty small compared to a cancer infusion. But it would still be chemo all the same. After these three months, I will be put on a remission drug for a long time.
The appointment was almost two hours long as we talked about different things from start to finish. He scheduled an MRA to check the larger blood vessels in my body to make sure they were okay based on some symptoms that I had been having. I ended up going home to talk things over with my family and pray. I called my doctors the next day to let them know that we agreed to proceed with the treatment.
So, the next Thursday, I went to Hillsborough for the MRA. Let me just say that this was not the most enjoyable thing. But the images are really quite awesome when they are done.
The assistant vascular doctor called me the next day to let me know the results. He said they didn’t find any major arteries affected by the vasculitis which was good. However, they did find something interesting in my left leg.
He asked me if I have ever had problems with my left leg. I said “well, yes. It has been turning blue recently and goes numb quite often.” He kind of laughed but then proceeded to tell me that they know why. One of the blood vessels in my leg is very tiny which restricts blood flow to the rest of my leg sometimes. This is called May-Thurner Syndrome. This was interesting because it was completely unrelated to the vasculitis.
However, as I continued my conversation with my doctor he said that the head vascular doctor wanted to admit me to the hospital on Sunday to monitor my symptoms and to do my first infusion because these symptoms were getting worse quickly.
This was not something that I wanted to hear. However, I had been having chest pain that was unexplainable, my legs and arms had been going numb, and I had been having nose bleeds. All of these things together had made the head doctor very uneasy.
So, the call to the hospital and a bed request was made for Sunday, March 20, 2016, making this my 5th hospital stay. Next time, I will talk about this stay and how God provided some really awesome things during this stay.