Fear and Stubbornness

I wasn’t sure where to go from that last post, life happened, it went on. But in reality that’s where I got stuck, I let fear take over even if I would not have admitted it then. I was afraid of what people would say and I hated getting those looks. You know the ones, the look of pity because I was young and had this life tragedy happen. So I did what I did best and I pushed it all away, deep down somewhere, where that seed of fear would be left to spread beneath the surface unseen and undetected. I decided that I would choose who to tell and when to tell them. At first it was just my parents, and then it was my grandparents, 4 months went by before I told my sister, and I waited 10 months before telling the guy I was dating. Few friends knew and barely any family. I thought I was doing what was right for me, when I was actually strangling my support system. This fear of people knowing had me in cold sweats when I had to tell someone new. But I was stubborn, I refused to acknowledge this fear, because I felt I had to be brave and strong for those around me.

I went through years of riding this roller coaster. I got poked by needles, I had multiple doctors, and I even traveled across the country to seek answers. Over the years I slowly learned to accept the unknown, and to reach out to others. I’m still playing the waiting game, still have multiple doctors, still get poked by needles, still take a dozen pills, still struggle with side effects, still get tired, still have a hard time keeping my weight up, and still I live. Because in all of this I’ve learned that life is unexpected, no one has a crystal ball. You can make choice after choice and still you can not control the consequence of the choice.

So I continue to live with this disease and a transplant may be right around the corner, but I no longer let it define me. That is the important lesson: YOU and only you can define who you are, your aliments are only a part of you; they are not who you are. You have to live life to the fullest, pursue your passions and goals, and leave fear in the dust. Life is a journey, maybe it will take unexpected turns, but you are still a traveler in it and the only direction that can be taken is forward. So embrace what God has given to you and make something great happen!


Mystery Uncovered

I was lucky that blood tests don’t take very long at all and I was able to have a follow up appointment to go over them. All my levels were relatively normal, except for one major one. The GFR, also known as glomuler filtration rate. I was lucky, or perhaps unlucky for having taken Human Physiology and understanding what the GFR was and why it was important. When I was shown the test results I immediately knew what was wrong, it wasn’t something I could be naive about and wait to have it explained, but I also didn’t have to go through the shock in learning. Now that I have you all wondering what I’m talking about and have therefore hopefully successfully gotten your attention, let me explain.

The GFR is the rate at which your kidneys filter your blood. You can probably now guess where I’m going with this. The average GFR for a person in their 20’s is 116. My test results showed mine to be at 59. You guessed it, it was an ‘oh crap’ moment for me when I saw that, because I realized that my kidneys were for some unknown reason failing. Personally I think that because of the knowledge I had, I took it very well. My PCP then referred me to a Nephrologist: a kidney specialist. Of course there was more waiting, and I’m not the most patient person on the planet.

I’m not big on horoscopes, but there is an interesting characteristic that I have found that I have that is a “Virgo” characteristic: I’m not very outwardly emotional, I am more observant and tend to process emotions and feelings more then showing them. Some call it being cold, I call it an advantage, because it allows me to step back and see the bigger picture.

I am the baby to a very caring and loving family. Which is why I let my mother accompany me to the kidney specialist. Interestingly enough I’ve come to find that most Kidney specialist are not US born. My first doctor was from somewhere in Africa, he was a tall man with an accent, had great patient care skills, and could draw diagrams upside down with skill. He took his time explaining to me and my mother how kidneys worked and the functions of them. He pointed out that my GFR put me in Stage 3 of 5 of chronic kidney disease and then to get a better idea of why I had this, he began asking questions about health history, family history, and symptoms. It was at that first appointment I became a bit of a medical mystery. You see I don’t have any family history, precursors, or symptoms that are associated with the disease I have. I’m not overwieght, I don’t have diabetes, I’m not in my 50’s, and I don’t have any symptom other than low energy levels to explain why me.

My doctor was stumped, he ordered multiple blood tests, an ultrasound, talked to other specialists in the field of Nephrology, and finally, months later he had me get a kidney biopsy. The biopsy was done in April, it was quite a simple process. In and out. I was given a sedative, wheeled into a CT room (the one machine that looks like a donut) they took a large needle with a hollow spring loaded needle inside and took multiple samples without having to stick me multiple times. After I was groggy but only had to wait a short time after. *Taa-daa* A cause was finally found! The very non-invasive biopsy revealed that an estimated 50% of my kidneys were scarred. The biopsied samples came back with the cause: ANCA vasculitis. For those of you like me, with very little to no medical background, this is an antibody that attaches to certain receptors in the body and destroys the vessels. Yep that’s right; my body had damaged itself. Luckily for me this ANCA thing was no longer active, although that also meant that the damage had been done and there was no way to treat it other than to wait for it to become active once again.